Phelan-McDermid Syndrome Foundation Email Format

Non-Profit Organization ManagementFlorida, United States11-50 Employees

The Phelan-McDermid Syndrome Foundation (PMSF) is a nonprofit organization based in Venice, Florida, dedicated to supporting individuals affected by Phelan-McDermid Syndrome (22q13 deletion syndrome) and advancing research related to PMS. The foundation provides family support, education, and resources intended to improve the quality of life for people with PMS, who may also experience autism, epilepsy, and related developmental challenges, and it collaborates with researchers to expand medical knowledge and potential therapies. Its activities include funding and promoting research, organizing education and awareness efforts, and fostering a global network through partnerships with PMS groups in several countries, while hosting international conferences and scientific symposia for those affected. PMSF operates as a volunteer-run 501(c)(3) organization that relies on donations from families and supporters, and it emphasizes inclusion and advocacy within the broader rare and genetic-disability communities. A recent initiative highlighted by PMSF includes the launch of Nutrition Guidelines for Phelan-McDermid Syndrome, reflecting ongoing programs to expand care resources, along with partnerships and events aimed at advancing diagnosis, testing, and awareness.

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