Resources for Parents & Patients
The Cooperative International Neuromuscular Research Group
The Cooperative International Neuromuscular Research Group (CINRG) is a consortium of medical and scientific investigators from academic and research centers who share the common goal of wanting to positively impact the lives of neuromuscular disease patients and their families by conducting well-controlled clinical studies.
- Phone: 412.224.2030
- Email: firstname.lastname@example.org
- Website: www.cinrgresearch.org
The FSH Society
The world’s largest grassroots network of individuals with FSH muscular dystrophy, their families, and research activists, the FSH Society was founded in 1991 by two patients, Daniel Perez and Steve Jacobsen. The Society helps people through education and outreach; funds scientific and medical research; and advocates for increased government and industry investment in FSHD.
- Phone: 781.301.6060
- Email: email@example.com
- Website: www.fshsociety.org
- Facebook: www.facebook.com/FSHSociety
Muscular Dystrophy Association (MDA) USA
MDA is leading the fight to free individuals — and the families who love them — from the harm of muscular dystrophy, ALS and related muscle-debilitating diseases that take away physical strength, independence and life. We use our collective strength to help kids and adults live longer and grow stronger by finding research breakthroughs across diseases, caring for individuals from day one and empowering families with services and support in hometowns across America.
- Phone: 800.572.1717
- Email: firstname.lastname@example.org
- Website: www.mda.org
Spinal Muscular Atrophy (SMA) Foundation
The SMA Foundation was established in 2003 by Loren Eng and Dinakar Singh. The mission of the SMA Foundation is to accelerate the development of a treatment for SMA
- Phone: 877.FUND.SMA
- Email: email@example.com
- Website: www.smafoundation.org
National Institute of Neurological Disorders and Stroke
The National Institute of Neurological Disorders and Stroke is an Institute within the National Institutes of Health that aims to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.
- Phone: 800.352.9424
- Website: www.ninds.nih.gov
- Facebook: www.facebook.com/NINDSandPartners
Neuromuscular Disease Foundation
The Neuromuscular Disease Foundation's (NDF) mission is to serve the GNE Myopathy/HIBM community through patient advocacy, raising awareness, educating physicians and the general public, and funding clinical research in search of a cure for neuromuscular diseases.
- Phone: 516.441.7126
- Email: firstname.lastname@example.org
- Website: www.curehibm.org
- Facebook: www.facebook.com/NDF.HIBM/