If you have a direct family member diagnosed with Phelan-McDermid syndrome, use the FAMILY MEMBERSHIP form.
For others including extended family, friends, medical professionals, educators, therapists and friends, there are two choices: use the GENERAL membership if you have more than one person in your membership and use the INDIVIDUAL & COMPANY membership if you have one person or you are registering as a company.
PMS Family Membership
If you have a child or adult diagnosed with Phelan-McDermid syndrome
General Membership
For anyone who cares about someone with Phelan-Mcdermid syndrome
Individual & Company Membership
For anyone joining as an individual or as a company
"We are stronger when we work together"
You are part of a community
Benefits of Membership
Because Phelan-McDermid syndrome changes everything, it requires a big-picture approach to delivering solutions. Rather than tackling single issues or symptoms, we work one-on-one with families to ensure every person and system is whole — from siblings and spouses to schools, social workers and scientists. Here is how we do it:
Join Us
We have the most comprehensive membership and patient registry in the world.
When you join the Phelan-McDermid Syndrome Foundation, you become part of the mission to make today better and the future brighter for everyone living with Phelan-McDermid syndrome.
Families First
We put families at the center of every decision and action we take, leaving no stone unturned to provide help for today and answers for tomorrow.
lead with strength
We believe every person with PMS is beautiful and meaningful, and we strive to honor and elevate their value every day in every way.
Act with Urgency
“Someday” is too far away when you’re living withor caring for someone with Phelan-McDermid syndrome.
Transforming today’s barriers into tomorrow’s breakthroughs
Be part of the Phamily
The Phelan-McDermid Syndrome Foundation is the largest and most trusted nonprofit working 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 condition that can compromise many critical functions in a person’s body, from learning and communicating to eating and sleeping. Started by families who understand both the beauty and barriers of having a child with this life-altering condition, the Foundation is doing everything it takes to support and connect families, improve medical care, and drive research breakthroughs to deliver treatments and cures faster.
Powered by the collective strength of families, scientific experts and community partners, we’ll achieve a world where Phelan-McDermid syndrome is treatable and curable, and every person and family affected are thriving.
We are Here for You Every Step Of The Way
From the moment of diagnosis to the delivery of treatments and cures