This website is under construction — we're actively building it out. Thanks for your patience.
We connect families, associations, clinicians and researchers across every continent — so no one faces Phelan-McDermid Syndrome alone.
4 founding organizations across 7 countries — and growing.
Phelan-McDermid Syndrome Global Organization
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
October 17–25, 2026 · October 22: PMS Day
5 euros, 5 more people, 5 kilometres. Walk, run or roll 5 km wherever you are and help make PMS visible worldwide. 100% of the proceeds from participants outside Spain go to PMS GO.
Register now(opens in a new tab)Whether you're a family, an association, a clinician or a researcher — start here.
Four organizations, one heart.
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.
Each colour is one founding organization of PMS GO; grey countries have an association that hasn't joined yet.
Families, associations, clinicians and researchers — whoever you are, there's a place for you in the Phelan-McDermid community.