Family Support

Finding Emotional Support and Resources

Above all, the Phelan-McDermid Syndrome Foundation was established to provide critical information and support to families affected by this rare disorder. We understand that a diagnosis of Phelan-McDermid Syndrome or related genetic disorder is overwhelming and finding a source for what to do next is confusing. We are here to share everything we know about this condition, but also to provide connections to a global support community of parents also affected by PMS.

How does PMSF support families?

Handshake

Connect

We connect families around the world through our Regional Rep support network and a series of social network sites.  The foundation supports regional in-person gatherings to decrease the feeling of isolation that often exists in the rare disease and autism community.

There is a PMSF Foundation Facebook page that includes latest news.  There are also several topic specific Facebook pages, including one closed Facebook page for parents and primary caregivers only.  Our international partners and members have established social media pages.  Click on the links below to connect.

Join the Foundation

Regional Rep Network

PMSF Foundation Facebook

PMSF Family Closed Facebook

International Social Media

Inform

Inform

Clinical Care, Education and Family Supports are all topics of concern for families living with Phelan-McDermid Syndrome.  PMSF provides information to families and from families to help create extraordinary lives.  View the video sessions from the 2016 International Conference that address issues  that are important to families.

Staying healthy, having therapeutic and educational support, figuring out long-term finances, adult living situations are a daily concern for families affected by Phelan-McDermid Syndrome.  Visit the Resources page for more information.

2016 McPosium Session Videos

Family Support Session Videos

Assessment and Monitoring Practice Parameter Guidelines

Clinical Care Practice Parameter Infographic

PMS Resources

Talk

Engage

The PMSF biennial international conference is the Foundation’s premiere networking event, providing opportunities for families to meet, learn and get involved in making a better life for all affected by Phelan-McDermid Syndrome.

There are many ways families can become active in the foundation including raising funds and joining #pmsfadvocacy efforts that strengthen legislation and increase funding resources.

You can become more involved in research and support activities by volunteering your time and talent on one the foundation committees.  

PMSF International Conference

PMSF Fundraising

PMSF Advocacy

+  Participate in Research

PMSF Committee Volunteers

Parent Action Committee

PMSF | Phelan-McDermid Syndrome Foundation