Empowering Individuals

Supporting Families

Here is YOUR Opportunity to Support PWSA | USA's Family Support Programs and Services

From those first days in the NICU, finding specialists and deciphering insurance claims, to sending your child off to school, navigating independence and adulthood, and the growing experiences of PWS in the later years of life, we are available every step of the way. We offer personal family support through our mentoring program, assistance with the IEP process as well as SSI and SSDI claims, trainings for schools and residential providers, connections and information on PWS specific providers, informative webinars, community-engaging conferences, a blog that focuses on the variety of PWS experiences, and a 24-hour crisis hotline. We are honored to be here for your family and the rest of the PWS community. Between April 1 – May 31, we will be accepting donations for our Family Support Campaign. Please consider making a gift so we can continue to be a source of Help and Hope to our community. 

May is Prader-Willi Syndrome (PWS) Awareness Month!

The month of May is an important time for our rare disease community because it’s recognized as Prader-Willi Syndrome Awareness Month. While advocacy efforts, the fight for research advancements, and celebration of our loved ones is important 365 days a year, the 31 days in May offer an opportunity to really show off our PWS pride. Throughout this email, we share several different ways YOU can make an impact!

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What we do

PWS 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

PWS 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.

Prader-Willi Syndrome 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

PWS 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 […]

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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…

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…

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…

Lifestyle Practices to Manage Gastroparesis

Lifestyle Practices to Manage Gastroparesis

  The lifestyle aspect of managing gastroparesis is often overlooked or underestimated. Some people think it is too simple a…

Creating a Parent Input Statement for Your Child’s IEP

Creating a Parent Input Statement for Your Child’s IEP

Contributed by PWSA | USA’s Director of Family Support Stacy Ward, MS As a parent, you know your child best…

Soleno Therapeutics Reports Positive Results from DCCR Study C602 for Prader-Willi Syndrome

Soleno Therapeutics Reports Positive Results from DCCR Study C602 for Prader-Willi Syndrome

Soleno Therapeutics, Inc. has revealed positive outcomes from the randomized withdrawal phase of Study C602, an extended treatment study of…