Ep30 Pulse 117: Commitment to Advocacy, Rare Disease Week, 50th Gala Tickets, Calls to Action

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 

Events

Rare Disease Day

Rare Disease Day Hub: PWS - Rare Disease Day - Prader-Willi Syndrome Association | USA

Rare Disease Week - EveryLife Foundation for Rare Diseases

Live Stream: Rare Disease Week - Attendee Corner Virtual Rare Disease Week - EveryLife Foundation for Rare Diseases

Rare Disease Day 2025 – Join Us!

Rare Disease Week Advocacy Calls to Action: Join Rare Disease Week Advocacy from Home - Prader-Willi Syndrome Association | USA

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: development@pwsausa.org

50^th Anniversary

Journey of Hope Gala: Donate to Diamonds & Denim 2025

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

BIPOC Listening Sessions: Listening Session: Prader-Willi Syndrome

Fundraisers

Prader-Willi Hot Stove | Powered By GiveSmart

PWSA Fundraising Pages - Campaign

Spotlight on Hope

New Mexico teen receives national acclaim for Girl Scout Gold Award project - KOB.com

Share Your Story - Prader-Willi Syndrome Association | USA

Call to Action!

Call to Action: Save Our Clinical Trials - Prader-Willi Syndrome Association | USA

Advocacy

Aardvark Therapeutics Rings the Closing Bell | Nasdaq

Family Support

Celebrating National Caregivers Day 2025 - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn: Memory, Confabulation, and Aging in PWS - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn - Prader-Willi Syndrome Association | USA

Share Your "PWS in Adulthood" Story - Prader-Willi Syndrome Association | USA

Research

New Project Seeks to Identify Characteristics that Predict Challenging Behaviors in PWS - Prader-Willi Syndrome Association | USA

Twins & Prader-Willi Syndrome Survey

Announcements/Resource Spotlight

Call for Nominations or Board of Directors

mailto:sward@pwsausa.org

LisaGrazianoLMF​T@gmail.com

Raise-Your-Voice-Toolkit-PWSA-USA-Revised-Version-2021.pdf

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