In a study conducted in Hershey, PA, Doctor Sankar Bandyopadhyay and Doctor Sol Dejesus have found that people who suffer from neuromuscular diseases have a high likelihood of being deficient in Vitamin D.
There are all kinds of rare genetic abnormalities that can cause this kind of weakness. The most common is spinal muscular atrophy.
Tweel has crafted a film that goes beyond the facts of Gleason's life into the depths of human anguish and resilience that define character. It promotes an awareness of ALS that goes beyond the best-intended any ice-bucket challenge — and ranks as a profound achievement.
I was diagnosed with a rare, debilitating disease called Friedreich’s ataxia (FA) when I was 17. I am now 33. Here are some things to consider when thinking about what rare disease means for your life.
AANEM members are joined by the common desire to improve the lives of patients with muscle and nerve disorders. To serve its members, AANEM’s volunteer leadership and staff live out this identity guided by three pillars: quality patient care, membership support and operations, and Foundation support.
With so many new diagnostic tests currently available, and increasing opportunities to improve patient outcomes through access to clinical trials, it is timely for Australia and New Zealand to establish a collaborative neuromuscular network.
Bulgarian Neuromuscular Diseases Association – BNMDA is a mass, apolitical, independent, social and voluntary organization, called to answer the necessities of the people affected by neuromuscular diseases.
To create a sustainable national network consisting of all interested stakeholders across neuromuscular disease that will contribute to:•The delivery of world-class clinical care for all neuromuscular disease patients across Canada...
The European Alliance of Neuromuscular Disorders Associations, formerly the European Alliance of Muscular Dystrophy Associations, (EAMDA) is a non-profit organization that serves as an information network, providing advice about neuromuscular conditions and offering information, support, and resources to its member organizations and families, caregivers, and professionals throughout Europe
This table has been prepared by Pr. Jean-Claude Kaplan - MD (Institut Cochin, Paris. France). This website is developed and maintained by Dalil Hamroun - PhD (CHU de Montpellier. France).
The aim of the Congress is to present a wide spectrum of neuromuscular diseases from the perspectives of advances in research, diagnosis and treatment.
The Journal of Neuromuscular Diseases aims to facilitate progress in understanding the molecular genetics/correlates, pathogenesis, pharmacology, diagnosis and treatment of acquired and genetic neuromuscular diseases (including muscular dystrophy, myasthenia gravis, spinal muscular atrophy, neuropathies, myopathies, myotonias and myositis).
Extensive resource from Washington University.
The Neuromuscular Disease Foundation's (NDF) mission is to enhance the quality of the lives of people living with GNE Myopathy (also known as HIBM) through advocacy, education, outreach and funding critical research focused on treatments and a cure.
This international, multidisciplinary journal covers all aspects of neuromuscular disorders in childhood and adult life (including the muscular dystrophies, spinal muscular atrophies, hereditary neuropathies, congenital myopathies, myasthenias, myotonic syndromes, metabolic myopathies and inflammatory...
TREAT-NMD was initially established as a EU funded ‘network of excellence’ with the remit of ‘reshaping the research environment’ in the neuromuscular field. The network has developed from its European roots to become a global organization bringing together leading specialists, patient groups and industry representatives to ensure preparedness for the trials and therapies of the future while promoting best practice today.
Patients who have lost the ability to move an arm or a leg, stand up out of a chair or swallow a mouthful of food due to a neuromuscular condition are often faced with months to years of physical therapy to try to restore or retain some level of muscle function. While many patients experience success in their efforts, those who don’t may face fewer clinical options as time passes from the original onset of their symptoms.
The latest research on neuromuscular disorders.