Making Each Day a Better Tomorrow for Individuals Living with PWS.

Our Research Statement

Many of the world’s most renowned PWS researchers and clinicians are members of PWSA | USA’s scientific and clinical advisory boards. Together they dedicate thousands of hours yearly to enhance research, write educational materials, and provide consultation; nearly all the major breakthroughs in understanding and treating PWS have come from these pioneers and heroes. PWSA | USA has been supporting research since 1983 and remains committed to supporting future advancements and breakthroughs.

At PWSA | USA we work to integrate what we have learned about the needs of our families through our support programs — with research that we think will make an important and practical difference in the lives of those affected by PWS

Our Research Strategy

The current focus of PWSA | USA research is supporting projects that have the potential for immediate and high impact for the PWS community. Therefore, PWSA | USA will support research-based translational grants or those showing high promise for translating basic biomedical knowledge to clinical application. The goal is to fast-track better treatment for the syndrome.

Prader-Willi Syndrome Resources for families
Woman Scientist doing Prader Willi Syndrome Research

PWS Clinical Trials

Learn which PWS clinical trials are currently recruiting.
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A doctor examining a young boy with Prader-Willi Syndome

PWS Clinics

Find clinics that support PWS research and care.
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Research Trials for Prader-Willi Syndrome

What is PWS?

Find more details about how Prader-Willi syndrome affects individuals.
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Post-Mortem Tissue Donation

As research into the biology of Prader-Willi syndrome (PWS) has become more sophisticated, studies on the postmortem human brain have become an increasingly important tool for understanding the neuropathology of the syndrome.

Post-Mortem Tissue Donation for Prader-Willi Syndrome

Autism BrainNet is a program of the Simons Foundation Autism Research Initiative (SFARI) that promotes innovative, high-quality research on postmortem brain tissue to improve the understanding of the biological causes of autism spectrum disorder (ASD) and related neurodevelopmental conditions.

We work with Autism BrainNet to promote a greater knowledge of neurodevelopmental conditions and brain tissue research, while ensuring the smoothest donation process for families during a very difficult time.

Studying postmortem brain tissue can lead to a better understanding of the cellular and molecular changes associated with ASD and related neurodevelopmental conditions in the human brain, as well as identify targets for new and effective treatments.


Autism BrainNet makes the donation process as simple as possible for every family. Donor families are treated with respect and compassion and provided with ongoing support. These are the steps involved in the process of brain donation to Autism BrainNet:

1. Call Autism BrainNet at 877-333-0999 for immediate assistance (optimally within 24 hours of the death of a loved one). If death is near, you can call Autism BrainNet to make plans for donation. Autism BrainNet’s staff is available 24/7 and will walk your family through the donation process.
2. Autism BrainNet coordinates brain recovery and transportation to their nearest site.
3. An Autism BrainNet clinician follows up with the donor family to schedule a video meeting or home visit to learn more about the donor.

There is no cost to families, and brain donation does not interfere with autopsy or funeral plans. Autism BrainNet’s staff can be contacted anytime to answer questions or concerns about the
brain donation process.

Pre-registration is not required to become a donor with Autism BrainNet. However, you can download and print the Intent to Donate Postmortem Brain Tissue for Research form and an Autism BrainNet Brain Donor Card to include in your preplanning documents.

Families are welcome to subscribe to the Autism BrainNet’s newsletter to receive program and scientific updates. To sign up, visit:
Please copy and paste from the suggested messaging below.

For more information about Autism BrainNet and the donation process:
Call 1-877-333-0999 | Visit | Email

Project Echo for PWS

ECHO 4 PWS Health Care Provider Series

PWSA | USA is excited to announce the launch of our new Health Care Provider Project ECHO Series. We are proud to offer this opportunity to health care professionals who work with patients affected by Prader-Willi syndrome (PWS) and to be the first PWS organization to implement Project ECHO® in the United States.

PWS Registry

Register for the Global PWS Registry

The Global PWS Registry is a powerful tool for the PWS community to advance understanding of PWS, areas of unmet need, standards of care, and new therapies. Data from the registry is shared back to the PWS community and is also used by researchers and scientists. By participating, families of those with PWS become part of the research team, helping uncover trends in causes and diagnosis as well as new directions in therapies and treatment.

A family participating in Prader-Willi Syndrome research

Articles of Interest

Find several PWS Articles of Interest across several categories, including genetics, brain imaging, growth hormones, sensory development, and physical more.

Visit our Blog

Harmony Biosciences Initiates TEMPO PWS Study

Harmony Biosciences Initiates TEMPO PWS Study

Harmony Biosciences Holdings, Inc. is seeking participants for its TEMPO study, a global Phase 3 trial investigating pitolisant as a potential treatment for excessive daytime sleepiness (EDS) in individuals aged six years and older with Prader-Willi syndrome (PWS). Pitolisant is a medication that could help manage sleepiness and behavioral issues in people with PWS. There […]

New PWS Clinical Study: Free Informational Webinar with Harmony Biosciences

New PWS Clinical Study: Free Informational Webinar with Harmony Biosciences

Join PWSA | USA and the team from Harmony Biosciences on Tuesday, March 12th at 8:00 p.m. EST / 5:00 p.m. PST to learn more about the upcoming Phase 3 registrational TEMPO study, a randomized, double-blind, placebo-controlled, multicenter, global clinical study that will further assess the safety and efficacy of pitolisant in patients with PWS, […]

Pitolisant Receives Orphan Drug Designation

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.  […]