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iCAN to send Youth Members to Visit the FDA

SILVER SPRING, MD - The International Children's Advisory Network is proud to partner with the Food and Drug Administration (FDA) to share seven different youth member perspectives at an upcoming FDA workshop. The title of the FDA workshop is  “Advancing the Development of Pediatric Therapeutics (ADEPT 6): Pediatric Clinical Trial Endpoints for Rare Diseases with a Focus on Pediatric Patient Perspectives”.  The purpose of this workshop is to discuss how pediatric patients themselves can be engaged in the development of clinical trial endpoints for rare diseases.  The morning session will focus on a selection of endpoints that are relevant in the pediatric population and the afternoon session will focus on data collection methods through a panel discussion.  The workshop will be held on the FDA campus in Silver Spring, MD on November 12, 2019 (Tuesday) from 8 AM to 4:30PM Eastern Standard Time. 

The iCAN youth member participants to attend and participate in the workshop

Youth members from the 2019 iCAN Summit

include Rhiannon Perry from Hope for Henry/KIDS DC, Regina Bustillos from KIDS Houston, Ananya Ganesh from KIDS Georgia, Audrey Beebe from KIDS Kansas City, Olivia Ohmer from KIDS Michigan, Logan Hood from KIDS Houston, and Elizabeth Sheeren from KIDS Michigan.

Each of our youth members will share personal stories of living with a rare disease. "iCAN is the best way to take something that may not be ideal, and to turn it into an amazing victory", said Amy Ohmer, Director of iCAN. "Opportunities for our youth members to use their expertise as patients living with rare, complicated and chronic conditions, offers a chance to do some good for not only themselves, but other kids".

To learn more about other ways in which youth members can share their voices, visit iCAN Projects and Opportunities page at

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