About PWS Families United

We are a nonprofit organization dedicated to supporting families and individuals living with Prader-Willi Syndrome across Connecticut and the surrounding region.

Our Story

Prader-Willi Syndrome Families United Inc. was founded by families who understood firsthand the challenges of raising a child with Prader-Willi Syndrome. Brought together by a shared need for community, resources, and hope, our founders created an organization where no family would have to face PWS alone. What began as a small gathering of Connecticut families has grown into a regional network of support, advocacy, and action.

We believe that when families connect, share knowledge, and stand together, they become a powerful force — for their loved ones, for their communities, and for the future of PWS research.

Our Mission

To support families and individuals living with Prader-Willi Syndrome by building a strong network of community, expanding regional awareness, providing educational opportunities, and funding research that improves lives.

What We Stand For

Community

Connecting families so no one faces PWS alone.

Awareness

Educating our region about Prader-Willi Syndrome.

Education

Empowering families, educators, and medical professionals with knowledge.

Hope

Funding research and championing a brighter future for those with PWS.

A Registered 501(c)3 Nonprofit

PWS Families United Inc. is a registered 501(c)3 nonprofit organization. All donations are tax-deductible to the extent permitted by law. We are proud to maintain GuideStar transparency certification.

EIN: 47-2760059

Get Involved

Whether you are a family living with PWS, a medical professional, educator, or community member — there is a place for you here.