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.

Find your association Newly diagnosed?

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4 founding organizations across 7 countries — and growing.

Phelan-McDermid Syndrome Global Organization

Awareness day

October 22

Stronger together

We unite families, clinicians, researchers and organizations worldwide to improve the lives of everyone touched by Phelan-McDermid Syndrome.

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

PMS associations worldwide

Across 13 countries

Where would you like to go?

Everything on this site, in one place

Whether you're a family, an association, a clinician or a researcher — start here.

About PMS

What Phelan-McDermid Syndrome is, how it shows up and how it is diagnosed — a clear starting point.

Learn about PMS

Associations

The Phelan-McDermid family organizations that exist around the world — and which ones are part of PMS GO.

See the associations

For families

Newly diagnosed? First steps, medical support, clinical guidelines and how to start an organization in your country.

Support for families

For professionals

How we work with clinicians and professionals, and the consensus guidelines for PMS care.

For professionals

Knowledge base

Guidelines, registries, and — soon — the experts, clinics and research consortia working on PMS.

Open the knowledge base

Membership

Organizations, families and professionals can all join. Three ways to belong, one global network.

Become a member

About us

Our story, mission, founding members, board of directors and how the organization is run.

Meet the organization

Four organizations, one heart.

Associations around the world

Find support in your country.

Phelan-McDermid associations and support groups exist in many countries. 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

Each colour is one founding organization of PMS GO; grey countries have an association that hasn't joined yet.

Browse the directory No association nearby?

We're here for you

Whenever you have questions, we're one message away.

Families, associations, clinicians and researchers — whoever you are, there's a place for you in the Phelan-McDermid community.