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FSHD Society
FSHD Society is a patient organization focused on research for facioscapulohumeral muscular dystrophy. They have made one investment, in miRecule, as part of a...
FSHD Society
FSHD Society is a patient organization focused on research for facioscapulohumeral muscular dystrophy. They have made one investment, in miRecule, as part of a Seed VC - III round on May 25, 2021.
General information
Firm type
Nonprofit
Location
Region
North America
Country
United States
City
Manchester
Corporate office
Manchester, NH, United States
Additional offices
Pasadena, CA · Baltimore, MD · Palo Alto, CA · Chicago, IL
Sector focus
Frequently asked questions
What is the FSHD Society's primary mission?
The FSHD Society funds and coordinates research aimed at treatments and cures for facioscapulohumeral muscular dystrophy (FSHD). It supports clinical trials, maintains a global patient registry, and convenes scientists across 25 countries.
How does the FSHD Society invest in research?
The Society awards grants and contracts to academic labs and biotech companies focusing on FSHD. It has funded work on genetic therapies, biomarker discovery, and drug candidates such as losmapimod from Fulcrum Therapeutics.
Does the FSHD Society function like a venture capital firm?
No — the FSHD Society is a nonprofit organization, not an investment fund. It deploys philanthropic capital through grants and partnerships, not equity investments, though its funding supports commercial-stage drug development.
Where does the FSHD Society get its funding?
Funding comes from individual donors, family foundations, corporate partnerships, and grants from government agencies. The Society does not disclose detailed financials publicly.
What is the relationship between the FSHD Society and pharmaceutical companies?
The Society partners with biotech firms like Fulcrum Therapeutics to facilitate clinical trials and share patient data. It does not take equity stakes but acts as a pipeline connector between researchers and drug developers.
How many patients does FSHD affect globally?
FSHD affects an estimated 870,000 people worldwide, making it the third most common inherited muscle disease. The Society's registry tracks thousands of patients across multiple countries.
What are the FSHD Society's main offices?
The headquarters is in Manchester, New Hampshire, with additional offices in Pasadena, California; Baltimore, Maryland; Palo Alto, California; and Chicago, Illinois.
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