PWS advocates had an incredible experience in Washington, D.C., this past May 4-6. From policy deep dives and meetings with congressional representatives, to cocktail meetups and seeing old friends, it was a busy, but nourishing, few days. The communications team at PWSA | USA spoke with several attendees at the fly-in to hear their thoughts on what they want their representatives to take home from these meetings, moments that stood out to them, and how to describe PWS advocacy with one word. 

Resources:

2026-Hill-Day-Ask-Document-RDIH.pdf

FDA Rare Disease Innovation Hub | FDA

2026-Hill-Day-Ask-Document-Genomic-Answers-for-CHA.pdf

2026-Hill-Day-Ask-Document-KASSA.pdf

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Voices That Move Policy: Recapping PWSA | USA's 2026 D.C. Fly-In - Prader-Willi Syndrome Association | USA

Can't Make It to D.C.? Here's How to Advocate From Home During PWSA | USA's 2026 Fly-In - Prader-Willi Syndrome Association | USA