Worldwide Membership

PMSF International Family Membership is shown in the map above.  Our PMSF family membership has shown steady growth over the past few years as seen in the graph below.

As of December 31, 2018, there are


individuals diagnosed with Phelan-McDermid Syndrome who interact with the Foundation.


individuals diagnosed with Phelan-McDermid Syndrome enrolled in the PMS International Registry

The Phelan-McDermid Syndrome Foundation(PMSF) offers support for families who are affected by Phelan-McDermid Syndrome(PMS) around the world. We connect families through our Regional Representative network, website, our monthly newsletter, Facebook, Twitter, Instagram, Youtube and membership outreach.

With new cases being identified every day we have divided our membership into regions. Regional Representatives put families in touch with other families who live nearby to help to plan regional gatherings. Click here to read stories of some of our amazing families.

Having a child with a rare disease can be isolating, especially when you have no idea if there is anyone else in your country who shares your child’s diagnosis.   PMSF strives to bring families together with regional and international networks.  PMSF international families can connect through our international conference, social media pages, monthly newsletters.  Your regional representative helps connect families around the world to improve their ability to care for a child with Phelan-McDermid Syndrome.

Some international regions have chosen to create a separate legally recognized organization in their own country.  We refer to these groups as Global Partners.  PMSF has maintained a belief that we are best working together and sharing information among partners and all international families.

The first step for international families is to join PMSF, which will initiate your regional representative outreach. By becoming a member, you will be counted in the PMSF membership.  Being counted means:

  • we will be more successful in applying for competitive grant applications,
  • we can bring more attention and awareness to our rare disease to advocate for research funding
  • we can build our registry to help researchers know more about our children

Number of PMS individuals diagnosed with PMS in PMSF Memberships

  • PMS International Registry Only
  • US Members
  • International Members

Membership vs Registry

Once you are a member, you will be contacted by your regional representative and can request membership to one of the many social media pages. You will learn that you are not alone and that there are other families who are living with similar challenges to yours.

If you would like to contribute to research, enroll in our registry.

Membership in the foundation is different than enrolling in the registry. Membership gains you access to the foundation and to other families while the registry is a research portal where you answer questions about your PMS child to help researchers help us. You can also learn more about PMS once you enroll in the registry.

Contact us if you have any questions.

PMSF | Phelan-McDermid Syndrome Foundation