Neuromuscular Program Resources

https://www.curecmd.org/

Provides information about congenital muscular dystrophies including care, research and support groups, as well as ways to get involved.

https://www.duchenneconnect.org

The website includes information on the causes of Duchenne and Becker muscular dystrophy (DMD), symptoms, and disease progression, and information about clinical trials.

https://www.jettfoundation.org/

Provides information and helpful resources about Duchenne as well as a free weeklong camp for kids with neuromuscular disorders. Their Jett Giving Fund assists families in purchasing vital medical and accessibility equipment.

http://mda.org

The website provides information about MDA clinics, support for patient and families, education resources and transition services to assist youth with disabilities as they prepare for adulthood.

http://www.parentprojectmd.org/site/PageServer?pagename=nws_index

PPMD provides information about Duchenne muscular dystrophy, the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births.

Listen to pediatric neurologist Elizabeth Kichula, MD, PhD, discuss the pathophysiology and clinical presentation of spinal muscular atrophy (SMA), prenatal screening, diagnosis and treatment for this neurodegenerative disease.

http://curesma.org/

Cure Spinal Muscular Atrophy funds and directs the leading spinal muscular atrophy research programs to develop a treatment and cure for the disease.

http://www.smafoundation.org/

The mission of the SMA Foundation is to accelerate the development of a treatment for spinal muscular atrophy, the number one genetic killer of infants and toddlers.

http://moebiussyndrome.org/

Find resources with information about Moebius syndrome, including newsletters and brochures, as well as support groups, latest news and events, and research studies.

http://www.myasthenia.org/

Find information about myasthenia gravis (MG), including living with MG, community support, research and how you can help.

http://www.myositis.org

Find information about myositis, including diagnosis, treatment and complications. The website also provides information about support, research and how you can get involved.

http://www.ryr1.org/

Find information about RYR-1 muscle disease for patient and families and learn about the RYR-1 International Family Conference and ways you can get involved.

http://www.neuropathy.org

Website provides information and resources about neuropathy, including support groups, Facebook chats, Neuropathy Support Network, research and more.

http://ucp.org/

Educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities.