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 website, our monthly newsletter; PMSF UPDATE, Facebook, Twitter 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.
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.
The foundation considers families our greatest resource and believes that collectively we can make the greatest impact to our families world-wide. Some international regions have chosen to create a separate nonprofit for their region. We call these groups “Global Parters”. 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 to contact you with information. By becoming a member, you will be counted in the PMSF membership. Being counted means:
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 look at the aggregate(group) data and learn more about PMS once you enroll in the registry.
Contact our Family Support Chairperson if you have any questions.