DiscoverPWS UnitedEp40 Pulse 122: PWS Awareness Month, Family Conference Registration Closed, Interview with Destiny Pacha, VYKAT XR Townhall Summary
Ep40 Pulse 122: PWS Awareness Month, Family Conference Registration Closed, Interview with Destiny Pacha, VYKAT XR Townhall Summary

Ep40 Pulse 122: PWS Awareness Month, Family Conference Registration Closed, Interview with Destiny Pacha, VYKAT XR Townhall Summary

Update: 2025-05-06
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The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 


24 Hour Crisis Line: 941-312-0400


PWS Awareness Month - Prader-Willi Syndrome Association | USA


United in Hope Conference


Home - 2025 United in Hope PWS Conference


High-Level 2025 Conference Schedule Family Conference


High-Level 2025 Conference Schedule Professional Providers


50th Anniversary


PWSA Memory: PWSA-Pulse-May-2021.pdf


Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA


Events


Financial Security Webinar: Webinar Registration - Zoom


Fundraisers


United We Brunch - Campaign


The Good, The Bad, The Bubbly CALIFORNIA 5/24/25's fundraising page for Prader-Willi Syndrome Association


PWSA Fundraising Pages - Campaign


Spotlight on Hope


Spotlight on Hope: Mastering Karate with Cameron - Prader-Willi Syndrome Association | USA


Share Your Story - Prader-Willi Syndrome Association | USA


Advocacy


Members Sought for the Drug Utilization Review Board


PWS Awareness Month Proclamation Toolkit


advocacy@pwsausa.org


etowle@pwsausa.org


Family Support


Adults with PWS Advisory Board Spotlight: Victor Penta - Prader-Willi Syndrome Association | USA


Family Resource Program - Parents/Caregiver Focus Groups


Family Resource Program - Sibling Focus Groups


Post a Message for Mother's Day - Prader-Willi Syndrome Association | USA


Ask Nurse Lynn: Fevers with PWS - Prader-Willi Syndrome Association | USA


Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA


Research


VYKAT XR Town Hall Summary - Prader-Willi Syndrome Association | USA


Dr. Pacha’s Educational Trends Survey: Caregiver Screener | QuestionPro Survey


Embracing Differences | The Journey Behind "It Starts With Hello: Katie’s Story About Prader-Willi Syndrome" - Prader-Willi Syndrome Association | USA


Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA


Request for Prader-Willi Syndrome Research Grant Applications - Prader-Willi Syndrome Association | USA


Announcements/Resource Spotlight


A Letter to Friends and Family - Prader-Willi Syndrome Association | USA


 


Intro Music: https://www.bensound.com/; License certificate #2242442 

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Ep40 Pulse 122: PWS Awareness Month, Family Conference Registration Closed, Interview with Destiny Pacha, VYKAT XR Townhall Summary

Ep40 Pulse 122: PWS Awareness Month, Family Conference Registration Closed, Interview with Destiny Pacha, VYKAT XR Townhall Summary

PWSA | USA