Tuesday, May 21, 2024

Muscular Dystrophy Resources

Find sites offering information and resources as well as personal views of muscular dystrophy along with assistance, facts and related information. Muscular dystrophy refers to a group of genetic, hereditary muscle diseases that are part of the muscular dystrophy family; many cause progressive muscle weaknesses including Duchenne muscular dystrophy (DMD). There are more than 100 diseases in total with similarities to muscular dystrophy. Most types of MD are multi-system disorders with manifestations in body systems including the heart, gastrointestinal and nervous systems, endocrine glands, skin, eyes and other organs.

Please browse through the independent muscular dystrophy sites and services highlighted below in this dedicated section of ABLEize to discover more including research updates, diagnoses and support.  If you found these resources beneficial please pass this page details on so others can also benefit.

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An online discussion forum covering all aspects of muscular dystrophy including research, grief and loss, education and general discussions.

Offering a range of clothing using the DMDT brand and logo to raide much needed funds. All profits made from the sale of DMD Trust items will go to support DMD Trust research aims and objectives.

A BBC News video clip highlighting and individual campaign for Jack Johnson a five-year-old, to find a cure for DMD and discussed its work with the BBC’s Roger Johnson and Sian Lloyd.

Based at Newcastle University undertaking and reporting on research to improve diagnosis, care and therapy to sufferers and their family. Includes details of clinical care with contacts.

A personal muscular dystrophy blog highlighting his life and challenges along with informative articles and related blogs of interest.

A dedicated MNT page entitles “All about muscular dystrophy” offering information, facts, symptoms and treatment details for sufferers of muscular dystrophy.

The UK’s official muscular dystrophy charity highlighting care and support services as well as details of the condition, ongoing research and how to offer a donation. Also runs a regular raffle with cash prizes.

Official NHS information site. Includes the types of muscular dystrophies, causes and diagnosis along with details of genetic testing.

A personal blog of the family of Ryan, diagnosed with Duchenne muscular dystrophy. Offers a dedicated insight into the condition and their ongoing fundraising for research and their quest to raise greater awareness of muscular dystrophy.

An informative article with resources and diagrams explaining Duchenne muscular dystrophy.