Advocate
Champion the rights and quality of life of people with Phelan-McDermid Syndrome, everywhere.
Phelan-McDermid Syndrome Global Organization
Bringing the Phelan-McDermid world together.
We connect families, associations, clinicians and researchers across every continent — so no one faces Phelan-McDermid Syndrome alone.
DE ES GB US
Founded by national organizations across 4 countries — and growing.
A worldwide community, holding each other up
Stronger together
We unite families, clinicians, researchers and organizations worldwide to improve the lives of everyone touched by Phelan-McDermid Syndrome.
4
Founding organizations
Germany · Spain · United Kingdom · United States
2026
Founded in Madrid
Born global, non-profit
22q13
The region we rally around
The genetics of PMS
14
PMS associations worldwide
Across 13 countries
Our purpose
What we're here to do
Four commitments, straight from our founding charter — the reason PMS GO exists.
Connect
Bring families and experts together to exchange knowledge and support one another worldwide.
Unite
Support and strengthen the global PMS community as one coordinated network.
Uphold rights
Promote human rights in line with the UN Convention on the Rights of Persons with Disabilities.
How we connect
One organization, three ways to belong
Membership
Join a global network of families, national associations and professional partners. Share, support and shape our direction.
Become a memberAssociations
A worldwide network of Phelan-McDermid associations working together to raise awareness and support families.
Find your associationResearch
Connecting associations, researchers and clinicians across borders — and unlocking the funding that makes discovery possible.
Explore research
Newly diagnosed?
You're not alone. Here are your first steps.
A diagnosis brings many emotions and questions. Take these first steps at your own pace.
1
Take a breath
It's normal to feel overwhelmed. Give yourself time — support is here whenever you're ready.
2
Learn about PMS
Understanding Phelan-McDermid Syndrome helps you advocate for your loved one.
3
Connect with others
Reach out to families who understand. You don't have to navigate this alone.
4
Build your team
Find clinicians and specialists experienced with PMS to support your family's needs.
5
Plan for the future
Every person is unique. We'll help you explore resources and plan what's ahead.
Helpful resources
Everything you need, in one place
Curated guidance for families, carers and professionals.
Associations around the world
Find support in your country.
Phelan-McDermid associations and support groups exist in many countries — connecting families, sharing resources and driving research. Hover a country to see its association, or reach out and we'll help you connect.
- Part of PMS GO
- PMS association — not a member yet
Hover a highlighted country to see its association — each colour is one member organization.
News & events
Latest from the community
A global family, taking shape
Four national organizations unite to launch the Phelan-McDermid Syndrome Global Organization.
Read moreWorld PMS Awareness Day — Oct 22
Why 22q13 matters, and how the community lights up every October to raise awareness.
Read moreConnecting research worldwide
Building bridges between registries, expert centres and families to accelerate discovery.
Read more
Make a difference
Your support helps a family feel less alone.
Every contribution funds research, connects families to the right association, and raises the global voice of the Phelan-McDermid community.