Empowering Individuals

Supporting Families

Here's How YOU Can Support PWS Advocacy Efforts

We encourage the PWS community to join PWSA | USA’s 2024 Walk a Mile in their Genes Advocacy Campaign. Participants will not only raise awareness for our rare disease, but  needed funds to enable our organization and volunteers to effectively advocate for the unmet needs of our loved ones living with PWS. Get involved and learn more by clicking the button below.

A newboard baby with a new Prader-Willi Syndrome diagnosis

New Diagnosis?

Fill a New Diagnosis form to receive our Package of Hope, a Parent’s Guide to PWS.
Click Here

Woman advocating for families affected by Prader-Willi Syndrome

Join our Newsletter

Join our mailing list for PWS community updates and other relevant information.
Sign Up

Updating Contact Information for a Prader-Willi Syndrome Database

Update Contact Info

Let us know your updated information so you can stay up to date with all things PWSA.
Update

What we do

Advocacy & Awareness

Increasing awareness and effectively advocating for Prader-Willi syndrome at the state and federal level is a critical component of our mission. We seek to involve all members of our community and work to keep you informed on the best ways to affect change.
Learn about Prader-Willi Syndrome (PWS)

Group of Individuals Advocating for those living with Prader-Willi Syndrome
Family affected by Prader-Willi Syndrome

Family Support

PWSA | USA' Family Support team provides individuals diagnosed with Prader-Willi syndrome, their families, and care providers with critical information and resources on PWS. We also provide education to medical providers, schools, and professional care givers through ongoing trainings, toolkits and other valuable resources. We support the family from the NICU through all stages of the PWS journey.

Research

PWSA | USA seeks to support research projects with the potential for immediate and high impact for the PWS community. The goal is to fast-track better treatment for the syndrome, and we proudly collaborate with partners representing pharmaceutical companies, research universities, and more to achieve that goal.

Prader-Willi Syndrome Research
Prader-Willi Syndrome Association New Address

Events & Fundraisers

Upcoming Events

August 2024
Aug 18
18 August 2024
Kimpton Brice Hotel, 601 E Bay St
Savannah, GA 31401 United States

As residential providers and caregivers are integral to the health and well-being of those living with PWS, it is critical they have access to the latest information. PWSA | USA’s 2024 Residential Providers Conference, Empowerment Heroes: Reveal Your Superpowers, will offer a variety of lectures and workshops in a collaborative space where professionals can exchange practice-driven […]

October 2024
Oct 12
12 October 2024
Trumbull Career & Technical Center, 528 Educational Hwy NW
Warren, OH 44483 United States

Dance Silly for Prader-Willi is our 1st annual event to raise money for the Prader-Willi Syndrome Association USA . Since our daughter Jayda was diagnosed with PWS, this association has provided us with so many resources, connections, and supportive individuals to walk alongside us in our journey. The Dance Silly for Prader-Willi event will be […]

June 2025
Jun 24
24 June 2025

PWSA | USA is pleased to announce a new partnership with the Foundation for Prader-Willi Research (FPWR) and the International Prader-Willi Syndrome Organisation (IPWSO) to host United in Hope – an International PWS Conference to be held June 24-28, 2025 at the Arizona Grand Resort and Spa in Phoenix, Arizona! The conference theme, “United in Hope” reflects […]

Visit our Blog

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

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

Dr. Detiny Pacha, ED.D., is thrilled to have written and published the first children’s book about Prader-Willi syndrome, It Starts With Hello: Katie’s Story About Prader-Willi Syndrome. PWSA | USA had the opportunity to sit down with Dr. Pacha to understand the meaning behind the book and what inspired her. She describes the book as […]

Fueling Hope: Aardvark Therapeutics’ $85M Boost Powers Breakthrough PWS Treatment

Fueling Hope: Aardvark Therapeutics’ $85M Boost Powers Breakthrough PWS Treatment

Aardvark Therapeutics has just hit a major milestone with an exciting $85 million Series C financing round! Led by Decheng Capital, with additional participation from several investors, including PWSA | USA, this funding is set to drive the development of ARD-101, a groundbreaking treatment for hyperphagia in Prader-Willi syndrome patients. ARD-101 showed promising early trial […]

Rare Disease Advocates Will Unite in Washington, D.C., to Celebrate National Prader-Willi Syndrome (PWS) Awareness Month, National PWS Awareness Day

Rare Disease Advocates Will Unite in Washington, D.C., to Celebrate National Prader-Willi Syndrome (PWS) Awareness Month, National PWS Awareness Day

May 8, 2024 (Washington, D.C.) — Prepare for a powerful convergence in the heart of Washington, D.C., on May 15th as advocates for individuals living with Prader-Willi syndrome (PWS) gather for PWSA | USA’s important advocacy event, the D.C. Fly-In. This year marks the 2nd National PWS Awareness Day, a significant milestone achieved through the […]