The International Children’s Advisory Network (iCAN) is excited to highlight Rhiannon Perry and her amazing work sharing her voice, insights, and experiences as a young adult with a chronic condition. Rhiannon, iCAN’s inaugural Young Adult Professional Chair and current member as well as an ambassador for the Hope for Henry Patient Advisory Board, is an accomplished young woman who recently participated in a Pediatric Trials Network (PTN) sponsored session at the 2023 Pediatric Academic Societies Annual Meeting. Co-led by PTN and iCAN, the session, titled “Controversies in Pediatric Clinical Trials,” explored topics related to pediatric clinical trials by way of debate with PTN Investigators as well as input from Rhiannon and the audience.
In addition to her advocacy work, Rhiannon Perry is in her second year at Mount St. Mary’s University dual majoring in Sociology and Human Services with a minor in Psychology. She, as a member of the iCAN D.C. Hope for Henry Chapter, Young Adult Professional Chair, and Hope for Henry Patient ambassador, has navigated being a pediatric patient advocate while graduating high school, beginning college, and continuing to live with the complications of her disease. She also attended the FDA workshop “Advancing the Development of Pediatric Therapeutics (ADEPT 6): Pediatric Clinical Trial Endpoints for Rare Diseases with a Focus on Pediatric Patient Perspectives” to share her personal story of living with a rare disease. In her work as the iCAN Young Adult Professional Chair, she helped develop a supportive community of patients, early career explorers, advocates, and future healthcare and policy shakers by hosting monthly meetings and focusing on topics such as “how to advocate for yourself.”
Pediatric Patients’ voices, especially those with rare conditions, are often unheard in the regulatory and industry spaces. The work that Rhiannon Perry and PTN have done and continue to do not only brings those voices to the forefront of rare disease awareness but also paves the way for future pediatric patient advocates by ensuring that those who can make real-time changes are actively listening. iCAN thanks PTN for continuing to be a champion for pediatric patient voices and including iCAN and its pediatric patient members in this fantastic opportunity. Please continue to the linked article below for further details about the PAS PTN-sponsored session.