PMSF Membership

Become a member of the Phelan-McDermid Syndrome Foundation

New Phelan-McDermid Syndrome Foundation members become part of a rapidly growing globally engaged organization with proactive members who share the same mission: “To improve the quality of life of people affected by PMS worldwide by providing family support, accelerating research and raising awareness”. Click one of the links below to begin the process of becoming a member or updating your contact information.

Membership is free and there are many benefits

Meet new families who share the same challenges you face

  • Your Regional Representative will help you get in contact with other families in your area
  • He or she will also answer any questions you may have, offer guidance and support.
  • Many regions have informal family gatherings throughout the year. If we don’t know who you are or how to contact you, you’ll miss out on an important opportunity to find support in your unique situation.

Foster research and scientific awareness

  • Being a member of the foundation is critical to furthering research. Our membership list provides us with the latest number of cases of PMS. That number will give us an opportunity to accelerate research initiatives into Phelan-McDermid Syndrome.
  • As the go-to source of information about PMS for the scientific community, an updated membership list helps us to direct researchers to the ready pool of subjects.
  • Joining the Foundation is not the same as enrolling in the International Registry(PMSIR). And enrolling in the registry does not mean you are automatically a member of the Foundation.  Both joining the Foundation and enrolling in the Registry will give you the most benefits.
  • Enrollment in the International Registry is key to compiling a database of medical information for researchers. Go to https://pmsiregistry.patientcrossroads.org to begin the process.

Make an impact on issues important to you

  • Having a clear picture of how many families are affected by PMS will help us to raise awareness of PMS and its related conditions among national and local lawmakers, federal agencies and other non-profits in the special needs community.
  • Knowing where families with PMS live allows us to target key decisionmakers.
  • An updated membership number will help us to persuade donors and funders that we are a group they will want to support.

Join a growing international community

  • We encourage families around the world to become part of our Foundation. Membership is open to everyone.
  • Our Global Partnership Program works closely with associations in other countries to the benefit of families everywhere.

Stay in touch with the Foundation

  • As a member you will receive every month our PMSF UPDATE newsletter witht he latest news about families, research and the Foundation.
  • You’ll also get the latest news and information from the Foundation e-mailed to you about critical topics such as our international conference, research studies or updates on key developments that affect your family.

Join Today!

PMSF | Phelan-McDermid Syndrome Foundation