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Information // Allied Organisations

The Muscular Dystrophy Campaign

The Muscular Dystrophy Campaign is the only UK charity focusing on all muscular dystrophies and allied disorders. It has pioneered the search for treatments and cures for over 45 years and provides practical, medical and emotional support to people affected by the condition.


Address: Muscular Dystrophy Campaign, National Office, 7-11 Prescott Place, London, SW4 6BS

The Arthritis Research Campaign

The Arthritis Research Campaign is the only UK charity wholly dedicated to research into treatment and cures for arthritis.


Address: ARC, PO Box 177, Chesterfield, Derbyshire, S41 7TQ.

Contact a Family

Contact a Family is the only UK-wide charity providing advice, information and support to the parents of all disabled children - no matter what their disability or health condition. Each year we reach at least 275,000 families.


Address: Contact a Family, 209-211 City Road, London EC1V 1JN.


MyoNet is a global multicentre, interdisciplinary research project on inflammatory myopathies, involving neurologists, rheumatologists, neuropathologists, pediatric rheumatologists and basic scientists with expertise in genetics and proteomics. MyoNet enables collection of a large number of patients with varying phenotypes which will allow subclassification of myositis. The project also generates the first interdisciplinary myositis database with prospective longitudinally collected clinical and laboratory data as well as biological samples forming a myositis biobank. The longitudinal cohort is unique and will permit studies of prognostic biomarkers by the use of modern proteomics and metabolomics technologies. Funding is from the European Scuence Foundation allowing the MyoNet Research Networking Programme to run for five years from May 2010 to May 2015. The MyoNet Research Networking Programme is operated under the European Medical Research Council (EMRC) which is the membership organisation for all the Medical Research Councils in Europe under the ESF in Strasbourg (France).


The Myositis Association

The Myositis Association is a USA organisation that provides information, support, advocacy and research for those concerned about myositis.


Address: The Myositis Association, 1233 20th Street, NW, #402, Washington, DC 20035.

Cure JM

The Cure JM Foundation (USA) was established in October 2003 with the goal of raising awareness of this rare disease and funding research to find a cure for Juvenile Myositis.


Address: Cure JM Foundation 836 Lynwood Drive Encinitas, CA 92024

The Muscular Dystrophy Association

The Muscular Dystrophy Association (of America) is a voluntary health agency dedicated to conquering more than 40 neuromuscular diseases that affect millions of Americans of all ages.


Address:Muscular Dystrophy Association USA, National Headquarters, 3300 E. Sunrise Drive, Tucson, AZ 85718, 1-800-FIGHT-MD (344-4863).

The National Organization for Rare Disorders

The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.


Address:National Organization for Rare Disorders, 55 Kenosia Avenue, PO Box 1968, Danbury, CT 06813-1968.

The European League Against Rheumatism (EULAR)

The European League Against Rheumatism (EULAR) is an organisation which represents the patient, health professional and scientific societies of rheumatology in all the European nations. EULAR endeavors to stimulate, promote, and support the research, prevention, treatment and rehabilitation of rheumatic diseases. In line with UEMS, EULAR defines rheumatology as including rheumatic diseases of the connective tissue, locomotor and musculoskeletal systems.


Address:EULAR, Seestrasse 240, CH 8802 Kilchberg (Zürich), Switzerland.

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