About the Phelan-McDermid Syndrome Foundation
Transforming today’s barriers into tomorrow’s breakthroughs
Phelan-McDermid Syndrome Foundation is doing everything it takes to make today better and the future brighter for everyone living with Phelan-McDermid syndrome — from the moment of diagnosis to the delivery of treatments and cures. Phelan-McDermid syndrome is a rare genetic disorder that can compromise many critical functions in a person’s body, from learning and communicating to eating and sleeping.
Phelan-McDermid syndrome is a rare genetic disorder that can compromise many critical functions in a person's body, from learning and communicating to eating and sleeping.
Currently, there are no treatments or cures to address the underlying cause of Phelan-McDermid syndrome.
Started by families who understand both the beauty and barriers of having a child with this life-altering condition, the Foundation is the largest and most trusted nonprofit organization dedicated to bringing hope, help and answers by:
Powered by the collective strength of families, scientific experts and community partners, we’ll transform today’s barriers into tomorrow’s breakthroughs — achieving a world where Phelan-McDermid syndrome is treatable and curable and every person and family affected is thriving.
Our Mission
Our Vision
Strategic Focus Areas
Global Partners
The Phelan-McDermid Syndrome Foundation has partnership agreements with many international organizations that support individuals and families living with this genetic condition. Our global partners share information and support and help us understand how many people are living with Phelan-McDermid syndrome worldwide.
There are many family groups around the world, here are some of our partners:
