Asociación Síndrome Phelan-McDermid
Spain
About the organization
Building bridges. Changing lives.
The Phelan-McDermid Syndrome Global Organization is a non-profit association that unites national organizations, families, clinicians and researchers worldwide — to advocate, connect and improve lives.
Our story
Born global, by the community, for the community
Founded in 2025 in Madrid, PMS GO brings together the national organizations that have long supported Phelan-McDermid families — so their strength is shared, not scattered.
We operate internationally as a non-profit association: an umbrella that helps families find each other, connects researchers and clinicians to the community, and raises one global voice for everyone affected by PMS.
No matter where a family lives — whether or not there's an organization in their country — our goal is simple: that no one faces Phelan-McDermid alone.
Building bridges between families, science and support
Our mission
To improve the quality of life of everyone affected by Phelan-McDermid Syndrome — by connecting families and experts, supporting the global community, and defending their rights.
Advocate
Champion the rights and quality of life of people with Phelan-McDermid Syndrome, everywhere.
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.
Founding members
United from the start
Four national organizations came together to found PMS GO — bringing decades of experience supporting Phelan-McDermid families.
Phelan-McDermid Syndrome Foundation (PMSF)
United States
Phelan-McDermid-Gesellschaft e.V.
Germany
Phelan-McDermid Syndrome Foundation UK — PMSF UK
United Kingdom
Membership
Ways to belong
Whoever you are, there's a place for you in the organization.
Full & founding members
National and regional Phelan-McDermid associations, with full voice and vote in the organization's decisions.
Delegate members
Families affected by PMS who don't yet have an organization representing them — a direct seat in the community.
Professional partners
Clinicians, researchers, NGOs and rare-disease associations who formally engage with our mission.
Governance
How we're run
PMS GO is a non-profit association governed by its members. Every position is voluntary, and decisions are made openly and democratically.
General Assembly
The supreme governing body, made up of all members. It elects the board, approves the accounts and sets the organization's direction.
Board of Directors
A volunteer board — President, Vice-President, Treasurer, Secretary and members — manages the association's activities between assemblies, serving two-year terms.
Registered non-profit association · Boadilla del Monte, Madrid, Spain
What guides us
Our values
Family-led
Founded and driven by the families who live this every day.
Global
One connected community across every continent and border.
Rights-based
Aligned with the UN Convention on the Rights of Persons with Disabilities.
Collaborative
Stronger together — families, clinicians and researchers as one.
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.