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Phone: 781-301-6060
450 Bedford St.
Lexington
Massachusetts 02420
USA
Website
2013 Top-rated nonprofits and charities

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Target demographics: patients, families, researchers and clinicians with an interest in FSH muscular dystrophy

Direct beneficiaries per year: 3,000 patients and funded over a dozen research studies.

Geographic areas served: all regions of the world

Programs: grant funding for FSHD research; outreach, education and support for patients and families; advocacy for FSHD patients' interests with the federal government and funding organizations.

Mission:
Be the premier catalyst for connecting all the stakeholders. Promote research focused on FSHD, through thought leadership, networking and funding.
Results:
Thousands of FSHD patients and families served. Over $4.4 million in grants to fund scientific and medical research. Seed grants led to the discovery of the genetic mechanism of FSHD.

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10/28/13
As a volunteer and patient with FSHD I am proud to be associated with the FSH Society. They are professional, compassionate and completely focused on the task of supporting patients and research for a treatment for this disease. We are lucky to have an organization that is this dedicated to helping ... more »
10/28/13
The FSH Society has been remarkable in promoting and securing funding for FSH research in the US and globally. They also provide great support and empower people with FSH to connect and share information and experiences proactively and positively... more »
10/28/13
As a graduate student working on a project related to FSHD, I'm really amazed by the work being done and the passion in this organization. They not only provide support for research but also push the field forward. Connecting researchers with patients makes the scientists think more about possible ... more »
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