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Empowering Individuals

Supporting Families

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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.

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New Diagnosis?

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

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Join our Newsletter

Join our mailing list for PWS community updates and other relevant information.
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Update Contact Info

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

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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)

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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.

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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.

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Events & Fundraisers

Upcoming Events

January 2024
Jan 16
16 January 2024

We can continue to make our voices and our stories heard through advocacy and community outreach. Beginning January 16, 2024, YOU can sign up for PWSA | USA’s 2nd annual “Walk a Mile in their Genes” advocacy campaign. Participants will not only raise awareness about PWS, but they will raise much needed funds to enable […]

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February 2024
Feb 01
01 February 2024

Between February 1 - March 15, 2024, we are collecting artwork for Theme 1, PWS Awareness. Create your artwork using the prompt: “What is your superpower? What are you capable of?” People with Prader-Willi syndrome are capable of so many wonderful things. We want to know what you, the artist, are most proud of. What […]

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March 2024
Mar 23
23 March 2024

2024 Clint Hurdle Hot Stove Dinner Tickets Now Available for Purchase! Join hosts Clint and Karla Hurdle on Saturday, March 23, 2024, on the beautiful grounds of Bradenton Country Club (4646 9th Ave W, Bradenton, FL 34209) in Bradenton, FL, and virtually from anywhere. Together, we can create a brighter future through your continued support! […]

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May 2024
May 13
13 May 2024
Washington, D.C.,

2024 D.C. Fly-In application now available! Soar to new advocacy heights in Washington, D.C.! We are excited to announce the application to attend PWSA | USA’s 2nd D.C. Fly-In, which will take place May 13 – 15, 2024, is now available. Find important disclaimer information by scrolling below, including what expenses PWSA | USA will be […]

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Visit our Blog

Want To Participate In The Walk A Mile In Their Genes Advocacy Campaign But Dont Know Where To Start Find Out From PWSA USA Staff By Clicking Here. 21, Prader-Willi Syndrome Association | USA

PWS Mom, Staff Member Melanie McDonald Spreads Awareness Through Local Library Donation

For Rare Disease Day 2024, PWS mom and PWSA | USA staff member Melanie McDonald wanted to take the opportunity to raise awareness right in her community of Jaffrey, New Hampshire. Melanie’s children, Henry (12) and Josephine (5 w/ PWS), love their town library and saw it as a great place for families to gather […]

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Pitolisant Receives Orphan Drug Designation

Pitolisant from Harmony Biosciences Receives Orphan Drug Status from FDA for Treatment of PWS The FDA has granted Orphan Drug status to pitolisant, the trial drug from Harmony Biosciences to treat excessive daytime sleepiness (EDA) and behavioral disturbances. The designation shows that the FDA considers pitolisant to be a promising treatment for people with PWS.  […]

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Neuren Pharmaceuticals Opens Third Trial Site for Phase II PWS Study

Neuren Pharmaceuticals is pleased to announce their third site participating in their Phase II, Open Label, PWS Study (Neu-2591-PWS-001) is now open for screening! Important information regarding this exciting milestone: Three sites are now open to enrollment! Rare Disease Research (RDR), located in Atlanta, GA, and Uncommon Cures, located in Chevy Chase, MD (8 miles outside of Washington, D.C.) and […]