{"podcast":{"title":"PWS United","slug":"pws-united-6997960","podcast_index_feed_id":6997960,"rss_url":"https://feed.podbean.com/pwsunited/feed.xml","website_url":"https://pwsunited.podbean.com","image_url":"https://pbcdn1.podbean.com/imglogo/image-logo/19126646/Apple_Podcast_Logo700nu.png","author":"PWSA | USA","episode_count":100,"summary":"Welcome to PWS United, a podcast for the Prader-Willi Syndrome community, brought to you by PWSA | USA. This podcast gives the latest news in research, advocacy, and family support by bringing together staff, volunteers, PWS treatment specialists, biotech and pharmaceutical representatives, caregivers, family members, and individuals with PWS. Our goal is to connect education, awareness, and resources with those living with PWS and their supporters. Join us in our mission to enhance the quality of life and empower those affected by Prader-Willi syndrome.","last_synced_at":"2026-06-30T22:19:18.194703+00:00","page_url":"https://stenobird.com/podcast/pws-united-6997960"},"episode":{"title":"Ep94 Advocacy is Everything: 2026 DC Fly-In Recap","slug":"ep94-advocacy-is-everything-2026-dc-fly-in-recap","published_at":"2026-05-26T10:00:00+00:00","page_url":"https://stenobird.com/podcast/pws-united-6997960/ep94-advocacy-is-everything-2026-dc-fly-in-recap","show_page_url":"https://stenobird.com/podcast/pws-united-6997960","url":"https://pwsunited.podbean.com/e/ep-94-advocacy-is-everything-2026-dc-fly-in-recap/","audio_url":"https://mcdn.podbean.com/mf/web/hzeswjwzniykruvj/Ep94_Advocacy_is_Everythingb652i.mp3","summary":"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 Facebook 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","meta_description":"PWS advocates had an incredible experience in Washington, D.C., this past May 4-6. From policy deep dives and meetings with congressional representatives,…","key_points":[],"chapters":[],"topics":[],"duration_seconds":2582,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/pws-united-6997960/episodes/ep94-advocacy-is-everything-2026-dc-fly-in-recap/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/pws-united-6997960/ep94-advocacy-is-everything-2026-dc-fly-in-recap.md","description":"Read the agent-friendly Markdown representation of this episode resource."}]}}