PWS United
PWS United
PWSA | USA
Ep32Pulse 118: Harmony Webinar, Hot Stove Dinner, State Advocacy, TREND GI Report, Community Publications
45 minutes Posted Mar 11, 2025 at 9:00 am.
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The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 
Events
United in Hope Conference
Hotel Locator: PWSA (Prader-Willi Syndrome Association) | 2025 International Prader-Willi Syndrome Conference - 6/24/25 - 6/28/25 - Phoenix, AZ | Tempe | Advanced Reservation Systems
Home - 2025 United in Hope PWS Conference
Mural: 2025 PWS Conference Mural Photo Submission - Prader-Willi Syndrome Association | USA
For info on sponsorship opportunities: [email protected]
50th Anniversary
Journey of Hope Gala: PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Other Events
BIPOC Listening Sessions: Listening Session: Prader-Willi Syndrome
Fundraisers
Prader-Willi Hot Stove | Powered By GiveSmart
Zahra's Night of Light - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
United for Change: PWSA | USA Advocates Make a Powerful Impact During Rare Disease Week 2025 - Prader-Willi Syndrome Association | USA
Call to Action for Illinois Families: Witness Slip
Illinois General Assembly - Full Text of HR0173
Family Support
Her Own Home with Family Nearby - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Interventions for Rectal Picking - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Share Your "PWS in Adulthood" Story - Prader-Willi Syndrome Association | USA
I Am Full – Stories for Jacob Book Club Discussion: [email protected]
Research
TREND Report: Gastrointestinal Issues in the PWS Community - Prader-Willi Syndrome Association | USA
New Project Seeks to Identify Characteristics that Predict Challenging Behaviors in PWS - Prader-Willi Syndrome Association | USA
Harmony Biosciences Initiates TEMPO PWS Study - Prader-Willi Syndrome Association | USA
Announcements/Resource Spotlight
Call for Nominations or Board of Directors
mailto:[email protected]
LisaGrazianoLMF​[email protected]
Community Publications - Prader-Willi Syndrome Association | USA