Phelan McDermid Syndrome Foundation
Phelan McDermid Syndrome Foundation
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About this organization
Mission
It is the mission of the Phelan-McDermid Syndrome Foundation to improve the quality of life of people affected by PMS worldwide by providing family support, accelerating research and raising awareness.
About
RESEARCH SUPPORT: The PMSF Research program was established to improve the quality of life for individuals and families affected by PMS by fostering sound genetic, biological, and medical research related to the cause, effects, diagnosis, and effective treatments of PMS. The goal is to increase stakeholder understanding of the Phelan-McDermid syndrome diagnosis, the genotype-phenotype correlations, natural history, biomarkers, and therapeutics. PMSF is supported by an international Scientific Advisory Committee and has developed strategic partnerships in the research and rare disease community to find ways to generate, support, and sustain the advancement of research in the areas of genetics, neurology, biology, and other disciplines that would benefit those affected by PMS. Central to the Research program, PMSF developed and maintains the largest patient data registry in the world. PMSF enables families to participate in research by sharing de-identified patient data and helping with research study recruitment to further the understanding of and research in PMS.
Interesting data from their 2020 990 filing
The purpose of the non-profit is stated in the filing as “The mission of the phelan-mcdermid syndrome foundation is to improve the quality of life of people affected by phelan-mcdermid syndrome worldwide by accelerating research, providing family support and raising awareness.”.
Their activities were defined as: “The mission of the phelan-mcdermid syndrome foundation is to improve the quality of life of people affected by phelan-mcdermid syndrome worldwide by accelerating research, providing family support and raising awareness.”.
- As per legal requirements, the non-profit's state of operation is reported as FL.
- The non-profit's address in 2020 as per the filing is 8 Sorrento Drive, Osprey, FL, 34229.
- The form of the non-profit organization shows 12 employees as of 2020.
- Is not a private foundation.
- Expenses are between $500,000 and $1,000,000+.
- Revenue is between $500,000 and $1,000,000+.
- Revenue less expenses is $77,829.
- The organization has 5 independent voting members.
- The organization was formed in 2002.
- The organization pays $377,080 in salary, compensation, and benefits to its employees.
- The organization pays $61,833 in fundraising expenses.
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