Projects & Opportunities

We have an exciting new survey from our friends at Labcorp for our youth members to take on the very important subject of making sure that Clinical Trials are inclusive for pediatric patients! 

This survey is aimed for youth members 12 to 17! The answers on this survey will help pharmaceutical companies ensure that clinical trials are supportive and accessible to the pediatric population. 

The Mi4 Summer Internship Program at CHOC gives students the unique opportunity to explore the future of healthcare — invaluable experience for anyone interested in or exploring the health care field. The interns learn to problem solve and create solutions unique to hospitals. Through the opportunities provided within the internship, students are immersed in several emerging areas that are relevant to the future practice of pediatric medicine:

• genomic medicine and personalized medicine

• regenerative medicine and stem cells

• nanomedicine

• robotics and robotic surgery

• artificial intelligence and big data

• medical devices and mobile technology

• innovations in healthcare delivery

It is estimated that more than 30 million Americans are living with one or more rare diseases, the majority of which are diagnosed in childhood. While scientific innovation offers much promise, still more than 93% of the 7,000 known rare diseases have no FDA-approved therapy. Yet, improvements in diagnostics, clinical care, and therapeutic interventions are transforming pediatric rare diseases into ‘pediatric-onset’ rare diseases and young adults are thriving decades into adulthood. However significant gaps remain as resources to support the transition to adulthood is often overlooked, leaving individuals feeling alone or isolated. The community relies on the resources available to them to help navigate benefit eligibility, the healthcare system, securing and managing caregivers, mental and emotional support, advocacy opportunities, and the general day-to-day challenges that may arise.

Although many resources exist, opportunities for cross-collaboration do not. The Young Adult Representatives of RDLA (YARR) would like to convene partners focused on serving young adults within the rare space. The Young Adult (YA) Coalition will serve as a platform for organization awareness, collaboration and problem solving so that we can all better support young adults with rare diseases.

KIDS CAN is doing a research project on Youth Advisor Training. We had the pleasure of attending the 2022 iCAN Summit and were able to talk to many of you, as chapter leaders, about our project. If we didn’t get a chance to talk to you at the conference and explain our research project, then please make sure to read the document carefully to fully understand what our project is looking into. We would appreciate it if chapter leaders who were both present and not present at the conference, answered our research questions so can get a well-rounded understanding of how youth are trained all over the world.

• Responses in by September 10th if possible.

• Please answer the questions in a copy of the document or an email back to Kate Stevens (stevens.kate@hotmail.com). 

• If you have any questions about the research project, please contact Kate Stevens (stevens.kate@hotmail.com) or Georgia Simkin (simkingeorgia@icloud.com).

• Click HERE to download the document.

If you do not wish to share your email or contact information, you may also respond to this email with your survey question answers and I will send the responses to the KIDS CAN team. 

Our partners at Pfizer have invited everyone at iCAN to share their thoughts and to provide feedback on an important patient-focused questionnaire. 

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To get started, click the link below.  

Calling iCAN Youth Members:

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An awesome speaking opportunity for a symposium is available for one amazing youth member.

You must have:

• Participated in a clinical research trial

• A diagnosed condition in one of the following therapeutic areas:

  • Childhood Cancer

  • Diabetes

  • Autoimmune Conditions

  • Gastro Intestinal Conditions

The symposium will take place the beginning of November, 2022 in person, with more details to come. 

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If you are interested, email info@icanresearch.org

with the subject "Interest in Symposium Speaking Opportunity".

The Pediatric Gene Therapy & Medical Ethics (PGTME) and the Compassionate Use and Preapproval Access (CUPA) working groups, housed in the NYU Grossman School of Medicine Division of Medical Ethics, are thrilled to announce our undergraduate internships for the fall 2022 semester!

Undergraduate internships provide a paid opportunity for rising juniors and seniors to be exposed to real-world medical ethics research in a fast-paced academic setting. 

We encourage applications from candidates who will contribute to the diversity of the NYU Langone Health community and support our commitment to access and inclusion, as we seek to support the diversification of the bioethics workforce through early exposure of students to ethical issues and careers. Previous ethics coursework/experience is not required, but applicants should have an interest in medicine, public health, bioethics, genetics/genomics, rare diseases, philosophy/history of medicine, medical decision-making, or patient advocacy. Applicants must be fluent in written and spoken English and either be a US citizen or hold a working visa.

This is a wonderful opportunity for a student to work on a collaborative team of bioethicists, clinicians, patients and patient advocates, and members of the biopharmaceutical industry. For 10 hours per week, the intern will assist with research and administrative duties under the supervision of a working group project manager. Interns will become familiar with pertinent and real-world ethical issues and will hone their own research capabilities. Interns will also learn about potential careers and opportunities in the broader field of bioethics. 

Applicants should submit the following to cara.hunt@nyulangone.org by JUNE 17th @ 11:59 PM EDT:

1) Resume/CV

2) 1-page statement of interest

3) Writing sample of up to 4 pages (bioethics or health-related topics encouraged)

Please direct all questions to Cara.Hunt@nyulangone.org.

Last January the European project Science4Pandemics was launched. This three-year project is led by Begonya Nafria, Coordinator of the KIDS Barcelona YPAG at Sant Joan de Déu Research Institute (IRSJD), with support from EIT Health. The main aim is to educate citizens, targeting the adolescent population in particular, in health education, focusing on infectious diseases and on the prevention and management of pandemics. All of us are aware of COVID-19, but beyond this particular pandemic there are other infectious diseases in the world, behaving in an epidemic or endemic way.

We know that sometimes health concepts and information related to health and diseases can be difficult to understand. For that reason, we are aiming to create a digital game, to make learning about infections more fun!

We are now in the moment of creation of the game and we need your help to know what you already know about pandemics and infectious diseases. We want to create an interesting game for young people (not too boring, not too complicated) from which you can also learn. At the same time, we need you to perform health research in pandemics, involving you in projects in which providing your opinion can help us learn more about prevention and management of pandemics. Do you want to help us?

If you have from 12 to 18 years old, you are welcome to answer the questionnaire!

English version: https://bit.ly/science4pandemics_eng

Spanish versión:  https://bit.ly/science4pandemics_es

Portuguese version: https://bit.ly/3Co6sss

In this video Dr. Quique Bassat, principal co-researcher on Science4Pandemics project and researcher on pandemics in Instituto de Salud Global de Barcelona (ISGlobal) principal co-investigator presents the questionnaire:

English version: https://www.youtube.com/watch?v=PPzSPUJhzOw

Spanish version: https://www.youtube.com/watch?v=5kohUcEI-Lc

The FDA is requesting 1-2 pediatric patients to give a 10-minute presentation, sharing their experience/exposure in using Virtual Reality (VR) devices as either a treatment or augmenting treatment, on July 12, 2022, during the PEAC meeting on Augmented Reality (AR) & Virtual Reality (VR) Medical Devices.

We are looking for 1-2 patients to present at the virtual PEAC meeting who are:

• willing to share their experience/exposure in using VR devices either as a treatment or augmenting treatment,

• have at least 3 months of device experience,

• are geographically located in the U.S. (to minimize time zone challenges) and

• can commit to participate no later than Thursday, May 26th.

The FDA has no preference for pediatric patients of a certain age or gender.  All are welcome to apply.  Email info@icanresearch.org today 

Calling iCAN Youth Members -

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Are you interested in presenting your research?

Then the 2022 Annual Southeastern Pediatric Research Conference is the perfect opportunity for you!

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Click HERE to learn more about registration and submissions!

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Click HERE to download the flyer.

The #RAREis Scholarship Fund was established in 2020 to help young adults with rare diseases to pursue their dreams through education. Thanks to the support of the #RAREis program by Horizon Therapeutics, The EveryLife Foundation is pleased to announce its third year of the #RAREis Scholarship Fund, a scholarship dedicated to the rare disease community. The #RAREis Scholarship Fund will award up to 53 $5,000 scholarships for the Fall 2022 semester. The scholarship application is open today, March 18 through April 22, 2022 at rarescholarship.org

The #RAREis Scholarship is available to applicants who are: 

• Over the age of 17 

• Residents of the United States 

• Diagnosed by a physician as having any form of rare disease regardless of treatment status. Undiagnosed patients are also encouraged to apply.  

• Must be planning to enroll full-time or part-time in undergraduate or graduate study at an accredited two- or four-year college, university, or vocational-technical/trade school for the Fall 2022 semester. There is no minimum amount of credit hours to be part-time.

Join iCAN and friends on Saturday, March 19th at 10:00 a.m. EST at ‘Ask the Experts’. This session will focus on Heart Disease.  

To register and to receive your zoom link, visit www.iCANResearch.org/events

This is a free 1 hour zoom session and kids can bring friends to join in.  It’s a great time for young people to meet experts, share ideas, talk about important topics, and have fun connecting.  

If you have questions on the event, please send them to info@icanresearch.org and we will help to get you started.  

Help one of our amazing sponsors by providing YOUR feedback on our survey. 

The two surveys are very brief (estimated between 3-5 minutes to complete) and can be taken while you look through two brand-new patient booklets for "Understanding Cancer". 

One booklet is green and will be given to young patients and the other booklet is brown and that will be given to older teen patients. 

To make sure that the booklets are helpful, we want to hear from you.  All questions are anonymous so you can be assured that the feedback left can be open and honest.  

iCAN Survey links are below and please take BOTH surveys to complete the project.  

iCAN Booklets are in the attachments for review before taking the survey.  

Survey 1:  Understanding Cancer 

Booklet 1

https://www.surveymonkey.com/r/NSF9VLM

Survey 2: Understanding Cancer 

Booklet 2

https://www.surveymonkey.com/r/NRLRN2S

We need to receive feedback on BOTH SURVEYS no later than Friday, January 28th 2022 by noon.  This is a great way to help lead iCAN and share your knowledge to make it better for all young people.  Thank you for helping!  #iCANMakeADifference

Any questions?  Please reach out to amyohmer@icanresearch.org.  Thank you!

Calling iCAN Youth Members -

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The Multi-Regional Clinical Trials Center wants to hear from YOU about your experiences with Clinical Trials!

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The MRCT Center would like to hear from iCAN Youth Members about their experiences with Clinical Trials for their next event! This opportunity would consist of being recorded via zoom with video on to answer a series of questions about your experiences with Clinical Trials. The questions will be provided beforehand so iCAN Youth Members are aware of what they will be asked.

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If you are interested in this opportunity, please email info@icanresearch.org with the subject of the video being "Yes, I am interested in participating in the MRCT's video interview"

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Any questions?  email info@icanresearch.org

Calling All iCAN Youth Members -

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Dr. Anthony Chang and friends have a very exciting MONTHLY series of events for YOU!  Bring a friend, tune in and share your ideas about what you want to do in research, science, innovation and technology.  

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Each month, iCAN and Dr. Chang will highlight a new topic for kids around the world to discuss and participate in fun sessions.  

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Please note, some sessions require advance registration to give plenty of time to have items mailed to attendees.  Be sure to register for all sessions to make sure you are on the list!  

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Any questions?  email info@icanresearch.org

We are seeking (1) iCAN Youth Member to share their experience (15-20 minutes) of participating in Clinical Research for the virtual class; "Clinical Drug Development", Led by Dr. Collin Hovinga.  This will include any experience that the Youth Member has on agreeing to participate in clinical research, why they chose to participate, what the overall experience was like and any advice that they might have to future researchers about working with children/young people.  

To learn more about Professor Hovinga and his work through iACT and the University of Texas - Austin, please click this link:

https://www.iactc.org/team-member/collin-hovinga/

The date for the speaking event is flexible and the youth may choose from any Monday in November at 6:00 p.m. Central. 

We will fill this opportunity on a first come, first serve basis - so please let me know as soon as possible at amyohmer@icanresearch.org.  

iCAN's very own Youth Member Olivia has been selected for the final round of voting for

Rare Artist 2021!

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To help spread awareness of supporting our young artists and to vote for Olivia during the month of October, please visit: www.rareartist.org

Directions on How-To vote, visit www.RareArtist.org and complete registration.* You can register using your phone number or email.

1. *Registration verifies that each person is voting once. You will be prompted to verify your email or phone number to vote.

1. Once you are logged in, you will see the top 20 finalists and can select your favorite pieces.

2. Click on any artwork to open the artist’s profile. In the artist profile, you can learn more about them, including their name, rare disease, and artist statement (their story).

3. To view a larger image of the artwork, click on the artwork again in the artist profile.

4. To vote for a piece, click the purple “vote” box under the artwork.

5. You may vote for 12 pieces total, with a maximum of 3 votes per age group. You can only vote for each art piece one time.

1. You may log in at any point during October to view your votes. Votes are not publicly displayed. Awardees will be announced the second week of November.

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To learn more about EveryLife Foundation's Rare Artist Program and Olivia, click here.

Calling All iCAN Youth Members -

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Join Dr. Anthony Chang and special guest Dr. Arlyne Simon for an exciting session of Ask the Experts on Big Dreams and Biomedicine.

Dr. Arlyne Simon is a patented inventor, biomedical engineer, children's author, and entrepreneur.

Bring a friend, tune in and share your ideas about what you want to do in research, science, innovation and technology.  

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Each month, iCAN and Dr. Chang will highlight a new topic for kids around the world to discuss and participate in fun sessions.  

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Be sure to register for all sessions to make sure you are on the list!  

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Go to our Videos page to view this session!

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Any questions?  email info@icanresearch.org

One young member of KIDS Barcelona is working with college colleagues about antibiotic resistance.

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You can help!

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Take this 5 minute survey:

https://forms.gle/Cbn1p1NKBP3fLCvB9

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Any questions? Email info@icanresearch.org

Calling All iCAN Youth Members -

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The FDA is seeking two youth members and a young adult to share insight to living with a special medical condition.  Details are included on the link below. 

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To learn more and sign up to participate, please send us an email at info@icanresearch.org.  

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Hurry, this closes July 19th. 

Calling All iCAN Youth Members -

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Registration is OPEN for the Jumo Health Presents the Virtual 2021 iCAN Summit to be held online from July 12th- July 16th, 2021.  Free registration is available by visiting www.icanresearch.org.

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All kids are welcome to attend!  

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Register by June 1st and you will be eligible to receive fun conference materials mailed to your home.  

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Any questions?  email info@icanresearch.org

Are you interested developing into a leader at iCAN?  Do you like to help others?  Are you seeking new experiences to help your community and the greater pediatric healthcare network of research, science, innovation, advocacy and more?  Then you might be interested in becoming a iCAN Youth Council Leader.  

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To submit your nomination for either yourself or an interested chapter representative, send an email to  info@icanresearch.org

If you have been diagnosed with a rare condition and want to share your voice in a specially created video to help others understand what it is like to be a kid living with a challenging medical condition, than this is for you!  

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The US Food and Drug Administration (FDA) has invited iCAN kids living with Rare Conditions to share their story in a video to be shown throughout the FDA 

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To participate, please send an email to info@icanresearch.org with 'FDA Rare Conditions Video' in the subject line, and your name, age, medical condition in the email. We will reach out to you to help arrange a date and time for recording your expert patient video.  

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Any questions?  email info@icanresearch.org

KidsX has some AMAZING opportunities for youth, both living with and without a current medical condition.

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These opportunities involve robots, AI, digital therapeutics, virtual reality, gameplay, and much more!

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If you are interested in providing feedback to cool digital health companies starting now to February 18, please check out the opportunities linked below to see if you qualify for any of the UX tests!

Click here to view the

KidsX Opportunities!

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*Must have parental consent to participate in UX tests*

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*Session will not be recorded*

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Beauty Bus is an incredible organization who works with celebrity makeup artists and provides in-depth tutorials for patients (off all ages), hospital staff, and caregivers, has offered to partner with Hope for Henry and iCAN to learn if they have a program that is impactful to patients and if so, how to grow their reach. 

Beauty Bus has asked that they host a makeup tutorial for DC iCAN and a limited number of other iCAN members across the country where everyone will get a bag of beauty products, learn from a celebrity makeup artist, and then get to share what they thought to their chapters about tutorial. 

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This event will take place

February 11, 7pm-8pm EST

via Zoom

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Please email amyohmer@icanresearch.org

if interested!

iCAN is helping to create a better understanding of what kids need when dealing with injections.  

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We invite all kids (and young adults) to help us by taking this survey.  

Enter this link in your browser or click below.  

https://www.surveymonkey.com/r/DD38T28

We have a sponsoring partner that has asked if there are any iCAN youth members living with the following rare diseases:

• Alexander (neurological)

• Lafora (epilepsy)

• Pompe (lysosomal storage)

The partner would like to engage in a brief patient-voice focus group with the kiddo(s) and ask the following questions.  Parents/Guardian/Siblings are invited to join in as well.  The date and time will be set after I receive response (just email me directly with youth member information) by July 30th

Your help is needed! Share your experiences of using devices (e.g. measuring spoons, dosing cups, inhalers) to take medicine.

The European Paediatric Formulation Initiative (EuPFI) works to improve the preparation of better and safe medicines for children. One area they are interested in is the “gadgets” or devices (e.g. measuring spoons, dosing cups, inhalers) that are used to help patients take their medicine.

They are doing a research study to find out what kind of gadgets kids and young people use to take their medicines and how easy they find using them, to help find ways of making the devices more user friendly.

PARENTS/CAREGIVERS and YOUTH MEMBERS are invited to help with this project and share your experiences, by taking part in a short survey:  https://tinyurl.com/eupfican-devices-survey  

We have a very fun opportunity for kids that have a passion in medicine and science, and also, feel comfortable in front of a camera answering questions and reading a script.  If this fits you, please reach out by July 30th, 2020 to let us know so we can pair you up with the Pediatric Trials Network to share your expertise!

iCAN President Leanne is missing her friends at iCAN, so we decided to have some fun and introduce virtual 'iCAN Leanne" to share the fun of what our youth members and adults are doing around the world.  To participate in this project, download, print or simply share iCAN Leanne in a picture that shows where you are or what you are doing during the time of the pandemic.  iCAN is excited to share your voice and to help remind the world of the many great things that our iCAN community is doing.  Send your pictures to info@iCANResearch.org and we will feature on our website.

If you are a youth member of iCAN and would like to be a part of a panel of youth speakers at the upcoming May 18th, 2020 virtual conference for the International Society of Pediatric Innovation (iSPI) during a session led by iCAN President, Leanne West, we would love to hear from you.  Four youth members will be considered.  Sign up today!  

KIDS Illinois and Lurie Children’s Epilepsy Center are currently working with the American Academy of Pediatrics (AAP) on a research project called Transforming Health Care for Children and Youth with Epilepsy (CYE).

For this project, the AAP would like to create a Council for Young Adults with Epilepsy across the United States. This will be a virtual council and the participants on this council will need be 18 years and older… or turning 18 very soon.

If interested, complete this very short survey:  https://www.surveymonkey.com/r/QPMQBWY.

iCAN Youth Members living with chronic or rare conditions are invited to participate in an online focus group with iCAN/UCB/Mindspot in an interactive, fun portal, while at home.  The event is scheduled for May, 2020 but we need you to sign up today.  Spaces are limited, so hurry! 

iCAN Youth Members and Adults are asked to help the Pediatric Trials Network (PTN) by reviewing language in a CONSENT.   

Please review the documents using the attached survey and share your feedback to the wording.  We want to know if it is understandable and easy-to-read, or if not, tell us.  Thank you for your help!   

iCAN would like to help the FDA to promote the Patient and Caregiver Connection program by sharing your experience with specific diseases and devices. The goal of sharing this information is to better understand the youth population.  This survey is less than 4 minutes long.  

We are looking for youth interested in representing iCAN at the American Academy of Pediatrics conference. You will present our organization at the iCAN booth. A parent or guardian must accompany each iCAN youth member. This event will be held in New Orleans, Louisiana.

NORD's Policy team is conducting a survey to help guide our future work. We invite you to take a moment to share your experience to help us better prioritize the needs of rare disease patients and families just like you--by taking the survey below.

We are seeking youth members to attend the PEDS2040 Conference https://peds2040.orgin Huntington Beach, CA. Youth members will be asked to work at an iCAN table and attend or assist with the Young Inventor Workshop. A parent or guardian must accompany each iCAN youth member.

 We have an exciting new survey for you to fill out. You do not have to have been diagnosed with Juvenile Idiopathic Arthritis to fill out the survey. All thoughts and experiences are welcome. 

Please share far and wide! This survey helps iCAN and our sponsor support youth who have been diagnosed with Juvenile Idiopathic Arthritis. iCAN appreciates your expert advice!

Thank you for your responses!

This survey is a great opportunity to help further families understanding of clinical trials and the process of partaking in one.

Presented by iCAN's Parent Council, this is an initiative by parents for parents.

Our partners at Pfizer have invited everyone at iCAN to share their thoughts and to provide feedback on an important patient-focused questionnaire centered on the topic of diversity.

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To get started, click the link below.

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#iCANMakeADifference

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Tell Doctors what you want them to know.

Take the survey to help all kids (and doctors) around the world.    

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Click the button below to take the survey, or scan the QR code above.

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The survey won't be open for long - so hurry- and make sure your voice is included in this terrific project!

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Survey Code is: 06019

Are you a young person living with hemophilia? 

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If so, please contact Amy Ohmer, amyohmer@icanresearch.org

for the chance to share your voice. 

More details will be provided at a later date.

Join us at the 2022 iCAN Summit presented by Jumo Health in Lyon, France!

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Travel to France, share your expert voice, engage with global leaders, and make friends around the world.

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This event is designed to provide children and young people with an invaluable opportunity to learn from one another, and to network with leading professionals from around the globe, while being immersed in science, medicine, advocacy, innovation, leadership, and more.

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Virtual Attendees can register through July 11th.​

In-person attendees should contact info@icanresearch.org

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Click HERE to learn more about the summit!

The Rare Artist Program was established in 2010 to exhibit the unique gifts of individuals impacted by rare disease to tell their story through art. Now in year 12, the Rare Artist Annual Contest is focused on providing a national platform for artists to advocate for the rare disease community through visual artwork and powerful artist statements.

Eligibility

• Participants are required to be part of the rare disease ecosystem, meaning you or someone you know is impacted by rare disease. 

• Participants are required to have a US residency. 

• Click here for additional guidelines

How to Enter

• The Contest will be open for submissions from June 1 through July 13, 2022 on the Rare Artist submission platform. All participants are required to complete an artist profile including contact information, age, and rare disease affiliation, provide an artist statement, and submit a photo of the artwork. For guidance on how to enter, please visit RareArtist.org

Prizes

• The Rare Artist Contest awards 10 artists, including children, teens, young adults, and adults. 

*New this year* 

• Pre-determined numbers of awardees per age group will no longer be in effect. However, at least one artist per age group will be awarded.  

• Each awardee will receive a $500 cash prize and a travel stipend to attend Rare Disease Week 2023 in Washington, D.C., where their art will be showcased on Capitol Hill at the Rare Artist Reception. Click here for more prize information. 

Social Media Contest

• After you enter the Rare Artist Contest, share your rare on social media for your chance to win one of two $50 e-gift cards to BLICK Art Supply Store. 

• To enter the Social Media Contest, use this Canva template, add your artwork, and share on social media using #rareartist. 

The International Children's Advisory Network, Inc. (iCAN) and KIDS Connecticut Chapter are hosting an exciting family-friendly fundraiser in partnership with the New Britain Bees collegiate baseball team.  TICKET SALES ARE LIVE!!!!  

Everyone is invited to join in the outdoor baseball fun on June 4th, 2022 at 6:35 p.m. EST as the Bees take on the Lake Monsters in-person at the New Britain Stadium, located at 230 John Karbonic Way, New Britain, CT 06051.  THIS IS AN IN-PERSON EVENT and TICKET SALES ARE ONLINE STARTING 1/27/2022 - 6/4/2022.  

To generously support iCAN, advanced ticket sales are available online at https://nb1.glitnirticketing.com/nbticket/web/logingroup1.php using the special password iCAN.

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If you can't attend but still want to help, consider making a donation to iCAN at www.icanresearch.org.  Simply scroll to the bottom of the page and select our safe and secure link.  Every donation helps us to support the important projects and opportunities that are needed for children everywhere, including those living with rare, chronic, complicated conditions.

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Who is invited to the iCAN charity game?: EVERYONE (iCAN Youth Members, Friends, Parents, Families, Teachers, Coaches, Sports Teams, School Groups, Church Groups, Hospitals, Doctors, Researchers, Nurses, and Neighbors to name a few) and anyone that loves baseball!) is invited to join in the fun.  Spread the word!  Each ticket sale helps iCAN!

When is the iCAN charity game?:   This special game will be held on June 4th, 2022 at 6:35 p.m. EST as the Bees take on the Lake Monsters at the New Britain Stadium.

How do I buy tickets?:  To buy tickets, all tickets must be purchased online, using the password iCAN. The link is below.

Click Here: https://nb1.glitnirticketing.com/nbticket/web/logingroup1.php

Enter the Password: iCAN

I want to help but I do not live nearby. Can I still support iCAN?:  You can still buy tickets!  Each ticket is $8.00 and you can buy a ticket to donate to children that can not afford to attend.  To do so, please contact iCAN at info@icanresearch.org to make a donation today.

Do I need to buy tickets online and use the password?:  Yes!  The online sale and password will indicate how many tickets were sold and how much will be donated to iCAN.  Please use this link for all purchases:

Click Here: https://nb1.glitnirticketing.com/nbticket/web/logingroup1.php

Enter the Password: iCAN

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Do you have a link to the stadium for directions?:  To make it easy, here is a link to the New Britain Bees homepage, schedule and other information.  https://nbbees.com/home/

I want to join iCAN.  How do I get involved?:  To join iCAN, simply send an email with your name, age (if a young person), and the state you are from.  We will match you up to an iCAN chapter nearby.  It is free, fun and open to all kids from anywhere.

Thank you for supporting this iCAN Fundraiser.  We hope everyone enjoys a fun afternoon at the ballpark!  To learn more about iCAN, visit www.icanresearch.org.

Calling All iCAN Youth Members -

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Dr. Anthony Chang and friends have a very exciting MONTHLY series of events for YOU!  Bring a friend, tune in and share your ideas about what you want to do in research, science, innovation and technology.  

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Each month, iCAN and Dr. Chang will highlight a new topic for kids around the world to discuss and participate in fun sessions.  

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Please note, some sessions require advance registration to give plenty of time to have items mailed to attendees.  Be sure to register for all sessions to make sure you are on the list!  

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Any questions?  email info@icanresearch.org

Join iCAN and friends on Saturday, May 21st at 10:00 a.m. EST at ‘Ask the Experts’ on Advisors vs. Advocates.

To register and to receive your zoom link, visit www.iCANResearch.org/events

This is a free 1 hour zoom session and kids can bring friends to join in.  It’s a great time for young people to meet experts, share ideas, talk about important topics, and have fun connecting.  

If you have questions on the event, please send them to info@icanresearch.org and we will help to get you started.  

Join iCAN and friends on Saturday, April 16th at 10:00 a.m. EST at ‘Ask the Experts’ on Pediatric Innovation with special guests Dawn Wolff and Mickey Fokken.

To register and to receive your zoom link, visit www.iCANResearch.org/events

This is a free 1 hour zoom session and kids can bring friends to join in.  It’s a great time for young people to meet experts, share ideas, talk about important topics, and have fun connecting.  

If you have questions on the event, please send them to info@icanresearch.org and we will help to get you started.  

Children's Health is hosting its annual “Innov8 4 Kids Challenge", calling all middle school, high school, college, and professional developers to bring their best innovation.

Help us innovate to improve healthcare for kids! Challenges include: - Gamifying Patient Education - Video and Content Creation - Culinary Cook-Off - Robotics for Healthcare

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Click here​ to download the flyer!

Are you:

• 11-18 years old?

• Do you have a health condition such as asthma, diabetes or epilepsy?

CYP Health Tech would like your input from young people aged 11-18 who have a health condition, and their parents or carers, in a project looking at how best to develop young people's health technology.

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The first meeting will be online in November 2021

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Email Jackie to find out more:

Jackie.martin-herry@york.ac.uk

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To learn more about the project, click HERE

Calling All iCAN Youth Members -

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Join Dr. Anthony Chang for an exciting session of Ask the Experts on COVID-19 and "Where Are We Now" with Special Guest Lisa Koppelman.

Bring a friend, tune in and share your ideas about what you want to do in research, science, innovation and technology.  

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Each month, iCAN and Dr. Chang will highlight a new topic for kids around the world to discuss and participate in fun sessions.  

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Be sure to register for all sessions to make sure you are on the list!  

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Click here to register!

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Any questions?  email info@icanresearch.org

Join the EveryLife Foundation in congratulating the RareVoice finalists who are amazing advocates that give rare disease patients a voice on Capitol Hill and in state government.

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iCAN is proud to share that KIDS Michigan youth member Olivia Ohmer is a finalist in the Artist-to-Advocate category of the RareVoice Awards.

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To learn more about the RareVoice Awards and register, click HERE

iCAN is seeking ONE YOUTH MEMBER FROM THE US for a session during the  1st International Conference on Rare Diseases and Paediatric Research that will be held online. More information about the meeting and the program is available at this link: 

https://www.pedrare2021.eu/

Within the program, on November 18, we will organise a Roundtable with Kids #KidsinResearch, that should be organised as a roundtable with representatives from several YPAGs on the topics of patients involvement and empowerment.

Our idea is to pre-record the session not later than November 12, in order that the young people cannot have any conflicts with school times and feel more comfortable.

We need one youth member from the United States to attend the session.  No medical condition is required.  

The session would last 25 minutes. Please find below a proposal of questions and KIDS involvement that we can use for organising the Roundtable.

I would make one question for the group and then a short discussion on some questions.

Questions

• What do you mean with children's participation in health decision making ? Is it a right? (KIDS France)

• Can you provide an example of children's participation in decision making in which you or your group have been involved? (KIDS from UK)

• Which are the benefits of involving children and young people in research? (KIDS from ICAN)

• Which are the challenges and the difficulties in involving children and young people in research? (KIDS Barcellona)

• Can you provide one example of involvement of young people in paediatric research? (KIDS Albania member can describe the activity done in the EPTRI surveys, while KIDS Bari member can present the serious game)

• Questions to be answered by all or some of them: How much do you think it is important the training in order to be correctly involved in research?

• Have you ever been involved in clinical trials? In which  activities have you been involved in?

On Wednesday, October 20th, the EveryLife Foundation will convene its 13th Annual Rare Disease Scientific Workshop to explore the “Current and Future Barriers to the Utilization of Accelerated Approval Pathway for Novel Rare Disease Therapies.” Through expert panels and real-world case study presentations, partners representing patient advocates, government agencies, pharmaceutical companies and researchers will identify the research, regulatory, and access policy barriers to increasing the utilization of the Accelerated Approval pathway for rare disease therapeutic development.

Watch the event livestream, HERE, on October 20th, and join the conversation on social media using #ScientificWorkshop2021

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The KIDS Georgia Chapter invites all iCAN Chapters to attend a fun online event using zoom with Georgia Tech’s HealthReach class at 5:30-6:15pm EST, on Tuesday, September 21st, 2021.  The Georgia Tech Students in this course will be leading iCAN through STEM related education activities and gathering feedback from youth members! See https://bmehealthreach.gatech.edu if you would like to learn more about what they do. 

Chapter Leader Cydney Opolka is inviting you to a scheduled Zoom meeting.

Topic: HealthReach and KIDs GA

Time: Sep 21, 2021 05:30 PM Eastern Time (US and Canada)

To RSVP - send an email to Amy Ohmer at 

Amyohmer@icanresearch.org with your name and chapter.  Amy will send back an email with the zoom log-in information so that you may enter the meeting.  

If you have any questions about the event or trouble logging in, please reach out to Cydney at cydneyao@gmail.com

Calling All iCAN Youth Members and Parents -

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iCAN is seeking youth members to share their expert voices (along with some parents!) to talk about ideas in pediatric innovation at the upcoming iSPI PEDS2040 Virtual Conference.  

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iCAN will select up to four youth members to participate - and parents are encouraged to join. 

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To sign up to participate, please send us an email at info@icanresearch.org by September 1st, 2021

To learn more about the event, visit: https://www.ispi4kids.org/peds2040/

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Hurry, this closes by September 1st, 2021. 

Calling All iCAN Youth Members -

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The AAP (American Academy of Pediatrics) wants to know what is on your medical wish list!

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Please click below to fill out the survey before the AAP's session at Jumo Health Presents the 2021 iCAN Virtual Summit on Tuesday July 13th!

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To learn more about the summit, head to our 2021 Summit page!

Join Remember The Girls & Move2Advocate for fun and relaxing Virtual Yoga Class!

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The class will be led by Elisabeth Parker from Move2Advocate.

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The Virtual Yoga Class will be available on Remember The Girls Facebook page live on Monday June 21st at 4PM Pacific Time/7PM Eastern Time!

Interested in speaking about your wearable and/or COVID19?

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Then you just might be the perfect fit for a Telemedicine Webinar on March 25!

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The webinar will have clinicians and researchers, including our very own President Leanne West, who are interested in how telemedicine will look in the future with wearables, as well as how covid has changed the timeline for telemedicine and what we’ve learned!

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If interested, contact us at:

info@icanresearch.org

iCAN is working on a very important project in which we are capturing youth expertise and experiences on clinical research through recorded videos. 

The goal of this project is to provide a curriculum for other kids (and adults) that want to better understand clinical research and what that means to kids.  

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The questions will be made into mini videos to help other kids understand "what is clinical research" or "what is an assent", etc..  You can answer the questions, which are linked below, in your own words using your own experiences.

The answer to each individual question can be very short - may 20 or 30 seconds max.  When you record, we can take the list and edit ourselves, so feel free to make one continuous recording. 

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Clinical Research Questions

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Any questions?Email

clairedestrampe@icanresearch.org

New EPTRI survey that has been reviewed by KIDS Italy, KIDS Albania, and KIDS Barcelona to create language that is comprehensible and child-friendly.

The survey is aimed at collecting data on preference of dosage forms for guiding the development of age-appropriate medicines. It was reviewed and translated by the YPAGs of Albania, Barcelona and Bari and is addressed to boys and girls up to 18 years of age. 

The survey is still open and available in 9 languages:

• EN USA: https://tinyurl.com/EPTRIsurveyOralMedsUSA

• EN UK: https://tinyurl.com/EPTRIsurveyOralMedsUK

• EN Africa: https://tinyurl.com/EPTRIsurveyOralMedsAfrica

• IT: https://tinyurl.com/EPTRIsurveyOralMedsItaly

• AL: https://tinyurl.com/EPTRIsurveyOralMedsAlbania

• SP:  https://tinyurl.com/EPTRIsurveyOralMedsSpain

• RO: https://tinyurl.com/EPTRIsurveyOralMedsRomania

• CZ: https://tinyurl.com/EPTRIsurveyOralMedsCzech

• SE: https://tinyurl.com/EPTRIsurveyOralMedsSweden

• NL: https://tinyurl.com/EPTRIsurveyOralMedsTheNed

• EE: https://tinyurl.com/EPTRIsurveyOralMedsEstonia

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Hello members, get ready for a new survey!

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This questionnaire will be used by iCAN to better understand kid thoughts on the following Assent Templates.

The goal for gathering this information is to ensure that all kids in the age ranges are able to understand the Assent Templates!

Check the links below to access your corresponding Assent Survey!

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Ages 3-6: Click here

Ages 7-12: Click here

Ages 13-18: Click here

iCAN's youth council is conducting a study on how the COVID-19 pandemic has affected aspects of your life. Whether remote learning hampered your learning experience or quarantine reduced your ability to receive necessary medication, we want to hear from YOU. It will take less than 2 minutes of your time but your feedback will be invaluable in helping policy makers. 

If you have any questions please feel free to contact Ananya Ganesh at agan1213@gmail.com. Thank you!

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Survey in link below:

Dr. Anthony Chang from iSPI and AIMed would like to create a series of talks designed for kids to share their voices.  

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To help us better design these sessions, we need iCAN Youth Member Feedback.  

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Take the survey below by Friday, August 21, 2020 to help us create the best event!  

Eli Lilly and Company (Lilly) is partnering with iCAN to feature art created by iCAN members under the age of 18.  Every submission that meets the criteria below will appear on the newly created website for pediatric research on Lilly TrialGuide.  The iCAN leadership team will also include the images on the iCAN website.

We would like you to submit an image that reflects your experience with healthcare, whether a photo, drawing, sketch, poem, etc.  Please check out the attached flyer.  The key is to be creative and tell your story.

Here are the criteria for submission:

Your voice matters!  We have many ideas for sharing information about a pediatric clinical research study and need your help to better understand what children around the world need.  To take this brief study, visit SURVEY IS CLOSED 6/22/20 or click on the link below.  Hurry, this survey is closing soon!

Calling all young authors for a chance to win a trip to Philadelphia to visit The College of Physicians of Philadelphia, CHOP Research Institute and $1,0000 cash prize.  To enter, learn about Dr. Hilleman, and write a 500-600 word essay that answers the question, “How was Dr. Hilleman’s integrity important to his success, and how is integrity important to you?” Essay should be written in English using complete sentences and appropriate grammar. One entry per person.  Application through the link below.  Good luck!  

iCAN has partnered to share one youth voice and one adult voice during from 11:00 am - 12:00 noon, eastern time, on May 20th, 2020 during a virtual event dedicated to Rare Disease.  If you are diagnosed with a Rare Condition and would like to take part in this virtual experience through sharing your personal journey, participation in clinical research and iCAN, we would love to hear from you.  Contact us today to learn more.   

iCAN Youth Members may be eligible to earn one of two scholarship(s) in memory of two special iCAN Youth Members; Kate and Felix.  The scholarships are created to support attendance at the 2020 iCAN Research Summit in Lyon, France from July 14th to July 18th, 2020.  Click on the link to see the rules and how to apply.  We can't wait to see what you do!  Good luck! 

Calling all iCAN youth!!  Are you interested in joining a fun group  of collaborative innovators interested in learning more about pediatric medicine and advocacy in healthcare?  Then, join us at iCAN Youth Council.  If you are interested, please send a message to the 2020 iCAN Youth Council Leader, Ananya Ganesh at agan1213@gmail.com  - We hope to hear your voice. 

Our partner, Thrust, is looking for iCAN Youth Members to help with beta testing. 

In game development, before releasing the game officially, it is often first released in two stages called the alpha and beta phases. In the beta phase, the game is likely to contain a number of issues and bugs and we need your help to make sure we find them all! We’ll also value any and all input you have to make our game as fun as possible! 

In partnership with the Pediatric Trials Network (PTN), we are seeking two parents of young children that have experienced acute pain. The two selected parents will be asked to join the external advisory board for the Clinical Outcome Assessments for Acute Pain Therapeutics in Infants and young Children (COA-APTIC), aimed at developing a core set of clinical outcomes assessments for infants and young children (0 – 2 years of age) undergoing treatment for acute pain.  To participate, please send an email using the link below.  

Attention: YOUTH MEMBERS LIVING WITH A RARE CONDITION!!!!

We need 3-4 youth diagnosed with a RARE illness, ages 8 -19 to particpate in an all-expense paid trip to "Advancing the Development of Pediatric Therapeutics (ADEPT 6) Workshop", November 11th-12th, 2019.

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This will include time as part of speaking panel, plus personal interviews.  Questions to be provided in advance.  Must be willing to share diagnosis.  

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iCAN is looking for four kids to tell their stories on "Empowering the Patient"  October 8 at 3:30 PM at the Cobb Galleria, Atlanta, GA. 

Do you want to be a leader within iCAN and help make a difference? Apply for iCAN's Youth Council Chair!

Moms, Dads, Grandparents, Kids, Community Members:

If you could go back in time and tell yourself what you know now about your medical experiences, what would you say?

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Submit any of the follow to be considered for inclusion in an iCAN/Pediatric Trials Network (PTN) published book:

• Personal essays (Maximum length: 10,000 words)

  • No minimum length​

  • Short stories

  • Poems

  • Illustrations

  • Electronic art

  • Photographs​

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Learn more about the project, HERE

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Email your submission directly to Abby Clark at abbyclark@icanresearch.org

with a signed copy of the iCAN Release form which can be found HERE.

We have a special request for an adolescent speaker that has experience with chronic weight management/obesity (i.e. liraglutide, semaglutide, other) and has had success with weight loss with treatment.

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Additional criteria, 

1. This youth speaker may share their voice at either a November 1st event or a Grand Rounds presentation on December 7th.  

2. The speaker could be recorded or virtual.  

3. Their speaking portion would be no more than 10 minutes and include their own personal story.  

4. Trial experience preferred.  

5. Must live in the US. 

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If you or anyone you know might be interested, please contact

Amy Ohmer at 

amyohmer@icanresearch.org.  

iCAN has an incredible opportunity for a family (or two) that has faced either (or both) of these situations:

·       Family that has opted for gene therapy treatment for a rare, inherited disorder

·       Family that is living with a rare genetic disorder that presented in a crisis way during newborn/neonatal period

The family would be asked to speak over the course of the next few weeks with the project coordinator.  This should take no longer than 2 hour time commitment and possibly split between two separate calls.  Questions would be sent in advance. A candid, free flow discussion will also take place on the topic of gene therapies and considerations of families having their newborn present so ill and with an inherited rare disorder that may benefit from this curative intervention.

If you or anyone you know might be interested, please contact

Amy Ohmer at 

amyohmer@icanresearch.org.  

Thanks to the success of the 2022 iCAN Summit, iCAN has a follow up Focus Group with Pfizer to better understand the needs of youth members from the United States to understand how they would like to learn about pediatric clinical trials.  This is a great opportunity for 6 youth members to share their voice.  All interested participants are welcome and participation in the 2022 iCAN Summit is not necessary for this Focus Group. 

For this exciting project, iCAN and Pfizer are hosting a focus group on Saturday, August 27th, 2022 at 10:00 a.m. EST with six participants within the ages of 10 years old to 19 years old.  The focus group will include a discussion about drawn characters used in clinical research materials provided to future patients.  Our goal is to better understand how young people would like information to be shared to them, and to know if the characters represent the way that information should be presented to future patients.  

Overview for Focus Group Participants:

• Must be between the ages of 10 -19 years old to participate and live in the United States. 

• Must have a working computer/laptop/iPAD with accessible wifi to participate and be available for 1 hour on August 27th, 2022 during the Focus Group Session. 

• Must be willing to share ideas and to be engaged with a video camera 'on' during the focus group.    

• Must submit a signed release form to Amy Ohmer at amyohmer@icanresearch.org by Friday, August 19th, 2022.  If a young person is under 18 years old, the parent must also sign the release.  The signed release can be completed using a screen shot, choosing 'edit', signing/adding date, and emailing back to iCAN at amyohmer@icanresearch.org.

• Participants agree to share their first name and age.  If participants do not want to share their first name, please let us know.  Age is important for us to know as feedback for a certain age-range of materials is going to be considered.  

• To help ensure that participants are comfortable with the types of questions asked, a sample outline of the event is identified below.  

Sample Focus Group Outline:

10:00 a.m. EST - Log in to virtual focus group meeting.

10:02 a.m. EST - Introduce yourself (first name only and age).

10:10 a.m. EST - Focus Group Moderator shares overview of patient facing material design and explains project. 

10:15 a.m. - 11:00 a.m. EST - Focus Group Moderator asks Participants to share their viewpoints of the materials.   Here are some sample questions that may be asked.  

• What format do you prefer to receive information about clinical trials? Something tangible, something animated, video, digital, etc.?

• What form of storytelling do you prefer? Putting yourself in someone’s shoes, seeing someone else’s journey, characters that are similar to you, characters that are different from you?

• What information and messages are most important for you to receive? Risks, benefits, process, etc.?

• How do each of the above questions apply to different age groups of young people?

Help share your opinion on a short Lyme Disease survey - diagnosis NOT needed - from one of our wonderful iCAN Sponsors (our friends that help us support important programming like the 2022 iCAN Summit).  This survey has been created to help gain knowledge from our iCAN Community. 

We are asking that you share this survey so that youth members (and families) have time to take it.  It should take less than 12 minutes to complete.  All survey responses are due by July 1st, 2022.  

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If you have any questions, please contact me at amyohmer@icanresearch.org. Thank you for helping our iCAN Community!   

Help share your opinion on a short Alopecia survey - diagnosis NOT needed - from one of our wonderful iCAN Sponsors (our friends that help us support important programming like the 2022 iCAN Summit).  This survey has been created to help gain knowledge from our iCAN Community. 

We are asking that you share this survey so that youth members (and families) have time to take it.  It should take less than 20 minutes to complete.  All survey responses are due by June 15th, 2022.  

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If you have any questions, please contact me at amyohmer@icanresearch.org. Thank you for helping our iCAN Community!   

iCAN is seeking posters for the 2022 iCAN Summit Presented By Jumo Health.

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iCAN Chapters and Community Members are encouraged to submit.

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Submission Guidelines:

1) Posters must reflect patient and family voice in research or be educational in nature regarding medical research.

2) For posters reporting research activities, research must be started at the sam time of submission.

3) Authors whose posters are accepted are responsible for submitting poster content in .jpeg format to info@icanresearch.org no later than June 1st, 2022.

4) All posters will be reviewed by iCAN Summit facilitators for approval.

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For more information, click HERE.

Virtual Internship, Based in Italy

Digital and social media represent an important source for gathering
and sharing information; specifically for health-related information. Early
research indicates that during the COVID-19 pandemic, the vast majority of social media users accessed science and technology content through social media. This is even more true when it comes to young people and teenagers, whose social media usage rates and the role exerted by social media platforms in their everyday life are much wider than those of the general population.

This position will provide a hands-on, participatory understanding of the global Clinical Research process, while offering further learnings in understanding global patient/provider needs, along with offering letter(s) of reference at internship completion. This internship is not paid.

Researchers want to understand YOUR perspective.​ Learn about a unique compound and share your ideas and thoughts in an online focus group. ​

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This is a fun volunteer opportunity for kids to learn a bit more about the "behind the scenes" of science, medicine, and research. You will also be helping researchers gain a better understanding of how to communicate this unique compound.

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This meeting will take place online in a safe/secure zoom link. 

iCAN is looking for:

• 4 youth members.

• From the United States. 

• English speaking.

• Ages 12 – 18 years.

• Have a Type 1 Diabetes diagnosis.

• Be available Saturday, April 30th, 2022 at 10:00 a.m. EST for 1 hour. 

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The Virtual Innov8 4 Kids Challenge is an event where teams rapidly create innovative solutions to common pediatric challenges while competing for prizes. Teams consist of high school / college students and professionals. Children’s Health invites you to join our second 2022 virtual challenge, partnering to advocate for innovation at Dallas-Fort Worth.

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Click here to download the flyer!

Join iCAN and friends on Saturday, February 19th at 10:00 a.m. EST to meet Megan Gorski at ‘Ask the Experts’. This session will focus on Leadership.  

To register and to receive your zoom link, visit www.iCANResearch.org/events

This is a free 1 hour zoom session and kids can bring friends to join in.  It’s a great time for young people to meet experts, share ideas, talk about important topics, and have fun connecting.  

If you have questions on the event, please send them to info@icanresearch.org and we will help to get you started.  

Calling iCAN Youth Members -

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PTN (the Pediatric Trials Network) wants to meet with you to discuss diversity & inclusion! 

PTN would like to create a video that highlights the need for diversity and inclusion from kids about kids for PTN. The video will be freely shared across all networks to spotlight the need for dedication of inclusion and diversity to ensure the best representation of kids and to create the best possible outcomes within pediatric clinical research.

This opportunity would consist of being recorded via zoom with video on to answer a series of questions about diversity & inclusion in a focus group setting. The questions that will be asked will be provided before the event, so you will have time to review the questions before the focus group.

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If you are interested in this opportunity, please email info@icanresearch.org with the subject of the video being "Yes, I am interested in participating in the PTN Focus Group"

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Any questions?  email info@icanresearch.org

iCAN has been asked to help gather expertise to improve pediatric clinical trials from young people living with Lupus.  

To support better healthcare treatments for patients living with Lupus, we are trying to understand a few points around parents and patients willingness to engage with clinical research for Lupus. We would be asking for a survey to be completed with perhaps 10 questions, which would hopefully not take more than 10 minutes? Questions would include:

-          Does your child currently take medication for SLE?

-          Would you consider finding out more about a clinical trial?

-          If yes, would you consider a clinical trial using a monthly injection?

-          What would help to support your journey in taking part in a clinical trial?

The survey is not completed yet, but we are hoping to establish a community of patients (and families) that would be willing to take the survey. 

Please let us know if you have any young people living with Lupus that would like to share their voice by sending us an email with:

• Name

• Email 

• Age

• Parent Name

• Parent Email

• Chapter (if any)

The email should be sent to:

Claire Destrampe clairedestrampe@icanresearch.org or

Amy Ohmer amyohmer@icanresearch.org.  

Calling All iCAN Youth Members -

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Join Dr. Anthony Chang for an exciting session of Ask the Experts on Discussing Your Health Story.

Bring a friend, tune in and share your ideas about what you want to do in research, science, innovation and technology.  

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Each month, iCAN and Dr. Chang will highlight a new topic for kids around the world to discuss and participate in fun sessions.  

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Be sure to register for all sessions to make sure you are on the list!  

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Click here to register!

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Any questions?  email info@icanresearch.org

Want to give feedback to a major pharmaceutical organization?  We need kids of all ages to watch a brief video and to share their voice through a short survey.  

Contact Amy Ohmer at info@icanresearch.org to receive the confidential link.  Your voice will help make improvements for kids around the world.  

Click here to view the workshop:

Transparency of AI/ML-enabled Medical Device

The purpose of this public workshop is to identify unique considerations in achieving transparency for users of AI/ML-enabled medical devices and ways in which transparency might enhance the safety and effectiveness of these devices. It also seeks to gather input from various stakeholders on the types of information that would be helpful for a manufacturer to include in the labeling and public facing information of AI/ML-enabled medical devices as well as other potential mechanisms for information sharing.

• This event is wonderful for high schoolers and college students

• Workshop Date: Thursday, October 14, 2021

• Location: Virtual; a link to the live webcast will be provided in your confirmation email

• Registration Deadline: 4:00 p.m. on Wednesday, October 13, 2021

• Click here to register

Calling All iCAN Community Members -

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Pepperdine University, led by Dr. Jazmine Gray, is on a mission to help the International Children's Advisory Network, Inc. (iCAN) improve our communication tools to ensure all youth members, parents, community and sponsoring partners and other stakeholders understand the amazing resources that iCAN offers. 

To do this, they need to better understand what iCAN is all about by talking to you!  

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On Wednesday, 9/22/2021, we will ask our iCAN community to meet with Pepperdine University students from 12:00 p.m. - 3:00 p.m. (PST) for a brief 15 minute phone call to help share your voice about iCAN.  

If you would like to participate to help build a better iCAN, please let me know - this will be fun and rewarding as our goal is to have Pepperdine University students create a series of teaching handouts that will be used to explain what iCAN is and how our youth members can help to share their expertise.  

If you haven't met Dr. Gray, please read her bio here. Her voice is strong and she shares the wonderful abilities that all of our iCAN youth members have to offer.   https://seaver.pepperdine.edu/academics/faculty/jasmine-gray/  

To participate:

Contact Amy Ohmer at amyohmer@icanresearch.org  with your name, email, (age for youth members) / (work title for adults), and the time that you would best be able to join in by Tuesday September 21st. 

If you prefer to record your comments in advance, please contact Amy Ohmer as soon as possible.

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Any questions?  email info@icanresearch.org

Are you interested in sharing your experiences with your medical device? Then you might be the perfect fit to share your story at the AIMed Conference Series!

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The events take place on:

March 30, from 11-11:30 EST - SPOT FILLED

June 29, from 11-11:30 EST -

SPOT FILLED 

September 28, from 11-11:30 EST

SPOT FILLED

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If you are interested, please send an email to info@icanresearch.org with the subject "AIMed Talk", your name, medical device, a photo, and what day of the series you would like to speak at. 

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Before the event, we will have a practice session

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Any questions? Email info@icanresearch.org

Calling All iCAN Youth Members -

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Rare Artist Contest now open for Submission -  create your own account and edit your entries up until the deadline on July 16th, 2021. Start your entry at https://rareartist.awardsplatform.com/?eType=EmailBlastContent&eId=3b86ad95-96fa-4237-8281-f3c6258e755a

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All awardees will receive a cash prize of $500.   After the judges narrow contest participants down to 20 finalists, we’re asking the community to make the final decision on who are the top 10 Rare Artists for 2021.

20 Finalists will be hand-picked by The Rare Artist judges and notified by August 18th, 2021. Finalists' artwork and artist profile will be announced publicly and able to vote on October 1st. The public will have until October 29th to decide on the top 10 artists.

10 Awardees will receive a cash prize and an opportunity to come to Washington, DC to display their artwork at the Rare Artist Reception during Rare Disease Week on Capitol Hill 2022.

2 children (ages 4-11) – $500 each

2 teens (ages 12-19) – $500 each

3 young adults (ages 20-30)  – $500 each

3 adults (ages 31+) – $500 each

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Any questions?  email info@icanresearch.org

Mobile World Capital will run a hackathon in parallel in both Barcelona, Spain and Boston, USA.  

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This is open to anyone based in Barcelona or Boston with an interest in improving children's experience at the hospital: creatives, storytellers, educators, technologists, psychologists, etc. 

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Begonya and KIDS Barcelona have been involved in co-creating the five challenges as group mentors and will then be leaders in selecting the winners of the hackathon.  

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To help KIDS Barcelona with selection of the winners, iCAN has been included to participate as part of the final selection jury for the top ten finalists. 

The voting will be online and the platform is being finalized, with details to come soon. 

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To sign up: 

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JOIN Hack The Hospital (May 21-23)  www.5Gtransatlanticlab.com/apply

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It is expected that there will be up to 150 participants per city (applications are in teams up to 3 people per city) with a focus on 50 teams of 6 people (3 from Barcelona - 3 from Boston) sharing new ideas for kids.

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The teams are focused on the following challenge areas (education, family, socialization, entertainment and mental health), in which they will create technology programs to support long-term adolescent (teen) hospital patients. 

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The 2021 Mobile World Capital International Hackathon, Mobile World Capital is an  IT organization that organizes every year in Barcelona for the "Mobile World Congress". 

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Inspiration Talks - LinkedIn events calendar:
WEEK 1 
May 10 - 5G and Emerging Technologies: how can they impact the hospital experience 
May 11 - Storytelling and Engagement for Kids
May 12 - Good Centric Design and Social Impact
May 13 - Ubiquitous UX Design for Youth

WEEK 2

May 17 - Innovation for and with pediatric patients
May 18 - From Digital to Spatial Health
May 19 - IoT, Identity and Big Data
May 20 - Augmented Senses

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Looking to voice your passion of rare conditions and pediatric clinical trials? Then we have the perfect opportunity for you!

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Have your voice heard by individuals from LabCorp and Covance on your passion and interest for rare disease and pediatric clinical trials.

If you are interested in participating in this amazing discussion via the web in March or April of 2021, please contact us at:

info@icanresearch.org

On July 2nd, 2020, the iCAN Youth Council will be collecting youth "iCAN" statements to share what kids around the world have done to change their challenges into "I CAN!!!!" 

Simply write up your statement to show how you made a difficulty into a success using just 3-4 sentences. Illustrations are welcomed too.  

Share back to info@iCANResearch.org

This survey based project will provide us with valuable insights as to what worked and what did not and also go a long way in helping stakeholders and health care providers recognize and prepare for challenges faced by youth with chronic illness/disabilities during times of crisis.

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Please take the survey and share to all of your classmates and friends.  Use the link below to take the survey. 

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All ages:  Click here

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For questions, please contact iCAN Youth Council Leader, Ananya Ganesh at agan1213@gmail.com 

Join us for a fun event in which we will review DigiKnowIt materials and website through an interactive focus group.  

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This is a fun project for the new year. 

iCAN has been invited to share our voices in a teen panel and a parent panel. All voices around the globe are invited! You do not need to have been diagnosed with a medical condition to participate. All you need is a computer or cell phone that can provide access to dial-in.  Video is needed to see the DigiKnowIt News website as you will be asked your thoughts about the content in order to help other kids and families.  

We plan to host the Advisory Panels on Saturday, January 30th, 2021. The teen panel will be 11am to 12pm and the parent panel will be 12:30pm to 1:30pm.

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RSVP to info@icanresearch.org

Please help by sharing your voice!

Four survey links to help guide you to the correct language:  

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Paediatric Device Survey Albania  

Paediatric Device Survey Italy

Paediatric Device Survey Spain

Paediatric Device Survey UK

Paediatric Device Survey Israel

Paediatric Device Survey India

Paediatric Device Survey Romania

We have a very fun opportunity for kids that have a passion in medicine and science, and also, feel comfortable in front of a camera answering questions and reading a script.  If this fits you, please reach out by July 30th, 2020 to let us know so we can pair you up with the Pediatric Trials Network to share your expertise!

While we know that your time this year was cut short with your iCAN chapter friends due to sheltering-in-place around the world, we would still love to share the good work at each chapter.  To share your work, we would like you to create a poster with your chapter name, the iCAN logo, and pictures showing what you worked on.  We need one poster per chapter and will share them during the summit.  To submit your poster, send it to info@icanresearch.org

iCAN, in partnership with a team of clinical researchers, has a very brief survey on naming a potential new clinical research project for teens.  Kids, please take a moment to share your voice and help be part of the future.  It will take less than 2-minutes to complete and may be done through the link below, on any device.  

During this time, many of our youth members are 'sheltering-in-place' at home.  iCAN would like to share what our members are doing to stay busy.  Take a picture and share to info@icanresearch.org what you are working on... doing homework, helping your neighbors, cooking with your family, taking care of pets, or other interesting things.  We will share your picture with the tag #iCANMakeADifference to help inspire others.  #TogetherweCan #iCAN

Calling all iCAN Youth Members - are you ready to help share your expertise? Join in and take a quick survey to help guide pediatric clinical research. 

#iCANMakeADifference

Join in for a fun and exciting event! 

PARENTS:

Tuesday, April 14th at 5:00pm EST

Please join my meeting from your computer, tablet or smartphone:
https://global.gotomeeting.com/join/892841485

You can also dial in using your phone for audio if needed:
United States: +1 (872) 240-3412
Access Code: 892-841-485

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YOUTH MEMBERS: 

Wednesday, April 15th at 4:00pm EST

Please join my meeting from your computer, tablet or smartphone.
https://global.gotomeeting.com/join/636260701

You can also dial in using your phone.
United States: +1 (872) 240-3212
Access Code: 636-260-701

iCAN Youth Members and Adults are asked to help the Pediatric Trials Network (PTN) by reviewing language in an ASSENT.   

Please review the documents using the attached survey and share your feedback to the wording.  We want to know if it is understandable and easy-to-read, or if not, tell us.  Thank you for your help!   

Thrust Interactive is developing a gamified asthma app that empowers kids (and parents), by providing personalized support to help make managing asthma as simple and easy as possible. Treks identifies the challenges that a child has with treatment adherence and guides them on a personalized treatment support journey in an engaging and motivational way.

Treks is currently in development and we need your help! We need feedback from kids and parents to help us make Treks as fun and engaging as possible. To get that feedback we are inviting iCAN members to join the Treks Asthma Advisory Council. As part of this select group, you will have the opportunity to share your thoughts and provide product direction. You will get a first look at Treks and when it's ready for testing, you will get to try it out for yourself. During this time, we may send out short surveys, and ask you to text us your ideas as they come to mind, or schedule a phone call with us and others on the Advisory Council to brainstorm ideas on how to make Treks better.

If you're interested, please reach out directly to our Director of Innovation and Research, Shane Owens at shane@th.ru.st. Thank you for your consideration!

iCAN has a new opportunity for kids ages 1-17 (parents can share on behalf of younger ones) to share their voice through a special survey designed just for them.  To take the survey, click below.  Your thoughts matter!  

iCAN invites you to take our Partner Survey and share your voice.  To take the survey, please click below.  

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One of our international community partners, PARADIGM, would like some feedback to better understand what kids think of research, so that they can more effectively help to promote 'patient-centered care' that supports our young person.  Attached are two informational sheets - one for kids and one for parents.