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What is a Rare Disease?
Neuromuscular diseases are considered to be rare diseases. What qualifies the various neuromuscular diseases to be considered as rare?
International Clinical Trials Registry Platform
The World Health Organization (WHO) maintains an international registry of clinical trials. The International Clinical Trials Registry Platform (ICTRF) lets clinical researchers communicate their research efforts internationally through registering their clinical trials.
MDA's Free Webinar Series
The Muscular Dystrophy Association (MDA) has produced a series of free live and archived educational presentations called the Public Webinar Series. Expert-led topics include a variety of important issues. Make time to attend a high quality educational presentation from your own home.
Genetic Disorders Sourcebook Review
Overall, the Genetic Disorders Sourcebook is a useful reference. It contains much valuable information in a well-researched and easy to read format for individuals with inherited neuromuscular disease and/or other inherited disorders.
Abilities Expo 2015
At the Abilities Expo, I had the opportunity to learn about the many products, services, and non-profit organizations that serve those with physical challenges, including those with neuromuscular disease. Admission to the Abilities Expo is free.
MDA’s Shamrocks Against Dystrophy Program 2015
Each year, retailers all over the U.S.A. sell green Shamrocks and gold Shamrocks. The money raised through the Shamrocks Against Dystrophy Program funds research, education, summer camps through the MDA. In 2014, Shamrocks raised $21 million!
Roussy-Levy Syndrome, also known as hereditary areflexic dystasia, affects the peripheral nervous system. Distinctive characteristics of this variant of CMT include tremors (rhythmic shaking) in the hands and arms and unsteadiness of gait (gait ataxia).
Coping With Grief Over Health Losses
When I first received a diagnosis with a neuromuscular disease, I went through a variety of emotions. Looking back, I recognize these emotions as part of the grieving process.
U.S. Legislative Update for Neuromuscular Diseases
Recently, important legislation affecting the neuromuscular disease community in the U.S. was passed by the House and Senate, and signed into law by the President. As members of this community, it is important to remain informed and to act in support of any legislation that is important to you.
Newborn Screening and Neuromuscular Disease
As diagnosis and treatment protocols become more advanced, newborn screening will likely become increasingly possible for neuromuscular disease. As these advances are made, ethical and practical decisions regarding newborn screening for neuromuscular disease will need to be made.
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