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The Phelan-McDermid Syndrome Foundation (PMSF) is the largest patient advocacy group (PAG) for Phelan-McDermid syndrome (PMS) in the world. The PMSF was established to provide critical information and support to empower families affected by this rare condition. We have grown into an organization that believes in the power of the collective patient voice, and the impact of each family story on our ability to truly improve lives.

The PMSF and our entire community of families, researchers, clinicians, and friends are here to share everything we know about PMS and provide connections to a global community. Together, we can lift each other up to create, sustain and improve the quality of life for everyone affected by Phelan-McDermid syndrome. We have created a worldwide virtual and local community to inform you and empower you on your journey.

The PMSF receives daily contact from families, extended families, clinicians, and researchers through email, social media, phone, and other avenues. We are committed to connecting our community and improving the lives of all affected by Phelan-McDermid syndrome.

Overwhelmed? Not sure where to start? Click here. We will find you the connection you seek.

“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”

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