Family Support

We are Here for You

The Phelan McDermid Syndrome Foundation and our entire community of families, researchers, clinicians, and friends are here to support you through every step of your journey. From understanding how to manage symptoms and finding parenting resources to meeting other families who understand what you’re going through or accessing clinical guidelines, we are here when and where you need us. Overwhelmed? Here are a few places to start:

Family Support Programs

Caregiver Support Groups

Living with a Phelan-McDermid syndrome diagnosis can be challenging. There are good days and days you would rather forget. Sometimes, just talking or listening to someone can help. There is comfort in knowing others may be experiencing something similar to what you are going through. We have a new Caregiver Support Group program where family members share their different perspectives on living with Phelan-McDermid syndrome.

Remember, we are here for you. Learn more about our Caregiver Support Groups by clicking here.

Build Your Network

You’ve heard the saying that it takes a village to raise a child. That’s especially true when navigating life and parenting a child with Phelan-McDermid syndrome. Building a strong network and care team is essential. From school and support services to medical support, financial aid and transitioning to adulthood, here are some resources that may help you build your team:

"Remember that this is a marathon not a sprint, so take the time you need for every step. Don’t wear yourself out trying to get everything done at once"

Gather and Learn

Every two years, families, researchers, clinicians, and others who support people with Phelan-McDermid syndrome come together at our International Family Conference to learn, laugh and uplift each other. Families describe the International Family Conference ais life-changing. This event is sometimes a family’s first encounter with others who are diagnosed with Phelan-McDermid syndrome. Often people who have met only through social media can be face-to-face. Our moms and dads have developed life-long friendships and networks of support at our gatherings.

Be sure to visit our Resource Library for conference recordings.

In non-conference years, we create a virtual or in-person regional conference. We partner with a clinical care center in a major city and invite speakers to present their work to our families. You will find resources from our Stanford and Boston Children’s Hospital events in the Resource Library.  These events reduce the travel burden on families while providing access to the best clinicians, researchers, and support providers in the local area. 

Contact Us if you would like to be involved in creating a local conference in your area.

Our Regional REPs coordinate periodic in-person gatherings to help families create connections, share stories and support each other. It may be in the form of a mom’s tea, an outing at the zoo, pot luck at a member’s house, or a day in the park. Groups have also coordinated regional conferences in collaboration with a local medical center. Having the opportunity to meet others who live in your area can reduce isolation and foster friendships.

Join Our Community

The Phelan-McDermid Syndrome Foundation has the largest community of individuals and families living with this genetic condition in the world. Our Phelan-McDermid syndrome community grows by nearly one new family a day.

Learn more and join us to find the hope, help and answers you need now.

"This is the family I never thought I'd join but couldn't live without."