BLUE BELL, PA - The Center for Pediatric Clinical Development at PRA Health Sciences is focused solely on the advancement of safe and effective medical treatments for children. Seventy percent of medicines used in children have only been approved in adults and most drugs used in children are used off-label without understanding of appropriate dose, safety or efficacy. To help increase the support to provide the greatest pediatric healthcare, PRA Health Sciences will be hosting an event on November 20th, World Children’s Day, to focus on children and to support global health iniatives.
As a partner of PRA Health Sciences, the International Children's Advoisory Network (iCAN), will be sharing the expertise of the pediatric patient voice through a speaking session by two special iCAN youth members, sisters Nicole and Melanie Mendez-Villarrubia, and their personal experience of living with a rare disease. Both girls are active members of their hospital’s youth advisory group, KIDS Illinois, at Ann and Robert H. Lurie Children’s Hospital and are heavily involved throughout iCAN as young patient advocates
The framework for the event will pivot around the focus for children’s rights to better treatment(s) and will highlight youth perspectives as patients. The World Children's Day event will also include a pediatrician’s view as a care giver, as well as, learnings to address the unique research needs that accompany pediatric research, medical care, and clinical trials for children. Additional sessions will highlight topics such as: access to care, privacy, logistics, and regulatory obstacles. Most importantly, the day will center on the importantance of inclusion using the pediatric patient's own voice in their healthcare decisions.
The speakers for World Children's Day include:
Nicole and Melanie Mendez-Villarrubia, two iCAN youth members living with Marfan Syndrome, a rare disease
Topic focus: Family Journey Living with Marfan and experience participating in multiple clinical trials
John Vanchiere, MD, Head of Pediatrics at LSU-Shreveport
Topic focus: Hope for Children and Their Parents: The Power of Pediatric Clinical Trials to Defy Natural Selection!
Jill McNair, Senior Director of Health Communication Services, Center for Information & Study on Clinical Research Participation (CISCRP)
Topic focus: Grass roots efforts to educate the public about the importance and need for clinical trials
Aaron Horowitz, Co-founder & CEO, Sproutel
Topic focus: Aaron’s personal journey growing up with a chronic disease and inspiration to create customized, patient centered companions for children with chronic illnesses
The event will have ongoing interactive activities for attendees, including compilation of activity packages to be donated to Children’s Hospital of Philadelphia (CHOP) the next day. To register for this wonderful event, please visit: https://my.prahs.com/WorldChildrensDay2019
To further be involved with World Children's Day, we invite you to join iCAN in support of UNICEF, one of our community sponsors through sharing your voice and signing the petition to support the rights of every child.
From UNICEF.org: Children have their rights denied every single day. We want to build a world where every child is in school and learning, safe from harm and able to fulfill their potential, and we know you do too. It's time to put children back on the agenda.