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

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Nutrition Discourse in the PWS Community - Prader-Willi Syndrome Association | USA

Nutrition in the PWS Family - Prader-Willi Syndrome Association | USA

NUTRITIONAL-PHASES.pdf

Resources: Diet and Nutrition - Prader-Willi Syndrome Association | USA

Spotlight on PWS

Share Your Story - Prader-Willi Syndrome Association | USA

Resource Spotlight

Swallowing in Prader-Willi Syndrome

Share Your Rare Story - Prader-Willi Syndrome Association | USA

Events | Fundraisers

Prader Silly: A Night of Rare Laughs - Campaign

Events from March 21, 2020 – September 12, 2020 – Prader-Willi Syndrome Association | USA

PWSA Fundraising Pages - Campaign

Podcast

Ep82: Kady Sweeney: See the Potential, Savor Typical Moments | PWS United

Advocacy

Rare Disease Advocacy in the PWS Community - Prader-Willi Syndrome Association | USA

Reflections from Rare Disease Week on Capitol Hill 2026 - Prader-Willi Syndrome Association | USA

PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA

Family Support

We're Here: Then, Now, Always! Developmental Disabilities Awareness Month - Prader-Willi Syndrome Association | USA

Play-based Assessment for Preschoolers: If you have questions, please email [email protected] or call 216-368-0112. Visit the website at https://caslabs.case.edu/dimitropouloslab/. Fill out the eligibility form at

 PRETEND Program for Preschoolers Eligibility Form

Ask Nurse Lynn: Nutrition Guidelines and a Group Home - Prader-Willi Syndrome Association | USA

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

Research

Aardvark Therapeutics Announces Voluntary Pause of Phase 3 HERO Trial in Prader-Willi Syndrome – Fri, 02/27/2026 - 16:05

PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA

Response to Anesthetic Survey: REDCap

Social cognition study: If you have questions, email [email protected] or call 216-368-0112. Submit interest at Assessing Play & Creativity Study - Interest Form

TEMPO PWS Clinical Study For Prader-Willi Syndrome - Enroll Today

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

Music: www.purple-planet.com

Disclaimer for show notes: 

This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects.