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Awarding Advocacy 1, Prader-Willi Syndrome Association | USA

Awarding Advocacy

PWSA | USA Spotlight on Hope contributed by Kristi Rickenbach, Mom to Justice

Justice, 20 living with PWS, has been a member of the Young Adult Rare Representative (YARR) since January 2023 and recently had the opportunity to learn more about one of the things she is passionate about, Advocacy.The EveryLife Foundation offers a YARR leadership academy to a “select group of young adults in the rare community.” This 8-week online course teaches the Rare students about “the roles and opportunities for patient representation in policy-making, drug development and the regulatory process and the steps it takes to enter those roles.”There were many great topics covered in the 8 weeks but some of the highlights according to Justice were Federal Advocacy 101, The basics of Policymaking and Patient Representation roles. At the end of the course, each student was required to present a Capstone project on a job they wish to apply for. Each Capstone included a resume with a cover letter and a 5-minute presentation explaining how “their patient perspective is vital in the role they chose”.Justice plans on taking what she has learned to make a difference not only for the PWS community but for all rare diseases.

Quotes taken from the EveryLife Foundation website. Click here to visit their site.    

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