The FSH Society is a nonprofit, patient-driven organization supporting research and education for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. Founded in 1991 by two individuals with FSHD, Steve Jacobsen and Daniel Perez, the FSH Society is the world’s largest and most progressive grassroots network of patients, families, clinicians and research activists.
The Jain Foundation is a non-profit foundation whose mission is to cure muscular dystrophies caused by dysferlin protein deficiency, which includes the clinical presentations Limb-girdle muscular dystrophy type 2B (LGMD2B) and Miyoshi muscular dystrophy 1 (MMD1). The foundation hosts an international dysferlin registry for patients who are genetically confirmed with LGMD2B/Miyoshi Myopathy/Dysferlinopathy.
To inquire about the registry, send an email to firstname.lastname@example.org. LGMD patients in need of genetic confirmation of their disease can find diagnostic support facilitated by the foundation at lgmd-diagnosis.org. The foundation is privately funded.
Friends of FSH Research
For over a decade, Friends of FSH Research has supported research studies that have contributed to our understanding of FSHD, offering the hope of treatment to the over 500,000 people living with the disease. There is no cure or treatment strategy for patients with FSH Muscular Dystrophy (FSHD). This debilitating disease slowly consumes skeletal muscle, robbing people of the active, healthy, and independent years of their lives.
Friends of FSH Research is a small, independent organization focused upon supporting research which will help lead us to finding a treatment or cure.
FSHD Champions is a voluntary, informal alliance of all national and international organizations advocating for FSHD patients and funding FSHD research. Its mission are mainly to promote communication and collaboration between FSHD researchers and FSHD research organizations/charities, to have the opportunity to work together to fund research projects that are beyond the scope of the individual organizations, to work collaboratively to promote International awareness of Facioscapulohumeral Muscular Dystrophy and the need for FSHD research funding.
The French Muscular Dystrophy Association (AFM-Téléthon)
The French Muscular Dystrophy Association is composed of patients and their families who are affected by genetic, rare, progressive and severely disabling illnesses: neuromuscular diseases. In order to fight those diseases, AFM-Téléthon chose to initiate innovative actions and a strategy of general interest that benefits all rare diseases and all persons with disabilities.
The FSH Group within AFM
The FSH Group within AFM is a group of patients or relatives dedicated to the FSHD, whose main mission is to keep the community up to date on all new scientific and medical discoveries, to listen to patients (testimonies, issues, needs, etc.).