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.

Quick Links to Infographics

About PMSF and PMS

Clinical Care Practice Parameters

Genetic Follow-on Testing

PMSF Brochure

How does PMSF support families?

Handshake

Connect

We connect families around the world through our Regional Representative 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.

The Foundation moderates four official Facebook pages including a PMSF Foundation Facebook page that includes the latest news, a closed Facebook page for parents and primary caregivers who are members of PMSF, a Legislative Advocacy page, and a closed Regional Representative page. The Foundation also maintains social media content on Twitter, Instagram, and YouTube. Our international partners and members have established independent social media pages and many PMS/22q13 special interest pages have been independently established.  Click on the links below to view the official PMSF Facebook pages:

PMSF Foundation(open)

PMSF Family Closed Group(closed)

PMSF Legislative Advocacy(open)

PMSFRegional Representative(closed)

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.

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.

PMSF Family Support Educational Webinars

+ 2016 McPosium Session Videos

+ 2016 Family Support Session Videos

+ 2017 PMSF Stanford Symposium Presentations

+ 2018 Family Conference Presentations

+ 2018 McPosium Presentations

+ PMS Clinical Care Infographic

PMS Resources

PMS Tips and Tricks Guide

Talk

Engage

The PMSF biennial international conference is the Foundation’s premier 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

+ Volunteer

PMSF | Phelan-McDermid Syndrome Foundation