Phelan Mcdermid Syndrome Foundation

RESEARCH SUPPORT: The Phelan-McDermid Syndrome Foundation (PMSF) works closely with researchers, pharmacological companies, biotechnology, academic institutions, and other external scientists with the ultimate goal of finding effective treatments for Phelan-McDermid syndrome (PMS). The PMSF contributes to research by breaking down barriers to patient participation. The PMSF provides information about and access to research opportunities as well as offers financial assistance for travel costs to certain research sites. The PMSF also works with its international scientific advisory committee (SAC) to set strategic goals in research and science for the PMSF and to stay informed of international PMS projects and research.

FAMILY SUPPORT: The Phelan-McDermid Syndrome Foundation (PMSF) is the largest patient advocacy group (PAG) for Phelan-McDermid syndrome in the world. The PMSF was established to provide critical information and support to empower families affected by this rare condition. The PMSF and its entire community of families, researchers, clinicians, and friends share everything they know about Phelan-McDermid syndrome and provide connections to a global community. The PMSF has created a worldwide virtual and local community and receives daily contact from families, extended families, clinicians, and researchers through email, social media, phone, and other avenues. Every two years, families, researchers, clinicians, and others who support people with Phelan-McDermid syndrome come together at the International Family Conference to laugh, share and learn. In non-conference years, the PMSF strives to create a virtual or in-person regional conference. The PMSF Regional REPs coordinate periodic in-person gatherings to help families create connections, share stories and support each other.