Patient Organizations dealing with all NMDs
Below you will find a list of all patient organizations and support groups that cover all NMDs. If you wish to look at a list of patient organizations specifically tailored to this disease section you can find a link to them on the menu on the left of the page.
Use the box below to narrow results by
country or organization name
ASEM - Association Espanola de Enfermedades Musculares is a nonprofit organization created in 2003 and represents a continuation of work developed by the Spanish Association Against Neuromuscular Disease continuously since 1983. It currently has 20 partnerships with more than 8,000 members, representing more than 50,000 affected peoples throughout Spain.
Muscular Dystrophy Association in the Czech Republic is a nationwide organization bringing people together with muscular dystrophy and other neuromuscular diseases. They represent the specific interests and needs of its members, by organizing educational rehabilitation classes, seminars and much more for both domestic and foreign stays.
Established in March 1990, ADMR aims to increase the quality of life and socio-economic integration of people affected by neuromuscular diseases. They hope that through their web site they inform people about projects and activities connected with the association, as well as various articles that would interest both in the medical field, but also spiritually. Whether you are affected by a neuromuscular disease or not, you are welcome on the ADMR site.
The idea of the Association began to take shape in September 1991 when a group of Portuguese parents felt the need to unite. At that time, existing information was very difficult to find or just not available. APN was officially created on June 15, 1992.
ABMM organizes conferences, a hotline, a social service, psychological service and a scientific council. It also offers financial support for research.
Founded in 1977 by André Torchio the ASRIM delivers a constant battle against more than 100 neuromuscular disorders.
Based in Buenos Aries, Argentina the Muscular Dystrophy Association was founded more than 20 years (in 1983) from the concern of a group of parents and patients suffering from various neuromuscular diseases physicians in conjunction with its investigation and treatment.
Created in 1958 and managed by a group of patients and their families, AFM has become a strong organisation combining the militant energy of its founding members, the professionalization of its volunteer managers and the commitment of its employees. AFM is involved in the development of scientific tools for the study of genetic and rare diseases in general, and provides scientists with new means and knowledge to accelerate understanding of genetic diseases and open treatment avenues based on an understanding of the genes.
The Australasian Neuromuscular Network (ANN) is committed to establishing a cohesive, integrated neuromuscular network that enables people to work together across Australia and New Zealand for the well-being of patients. We will provide a forum to advance and disseminate information, be a single voice to advocate for patients and guide best practice in diagnosis, care and treatment. Patients will benefit considerably from access to clinical trials (via international partners such as TREAT-NMD), new gene discoveries, improved diagnosis and new therapies through coordinated excellence of care.
The ANN is structured to address issues relating to clinical care and research effort. Each area has a Steering Committee comprising individuals with expertise in each area, as well as providing representation of all major groups active in the care and study of individuals with neuromuscular disorders across Australia and New Zealand.
Given the rare nature of the disorders, and that patients are located all over Australia and throughout New Zealand, a collaborative network to address diagnosis, prevention and treatment is extremely important. The recently established Australasian Neuromuscular Network (ANN), involving doctors, medical professionals, scientists and representatives from advocacy groups will ensure that the best evidence from our clinical and laboratory based research is quickly translated into best clinical practice.
BelAPDIiMI: the Belarusian Association of Assistance for Children and Young People with Disabilities
The NGO "BelAPDIiMI" unites about 4000 families in Belarus bringing up children and young people with intellectual and physical disabilities.
The charitable association "Neurohereditary Diseases" was еstablished in 1992 to render medical social assistance to patients with neurodegenerative and neuromuscular diseases (HN&NMD) along with other rare diseases.
The German Society for Muscular Dystrophy Association DGM was founded in 1965 by doctors and the parents of children affected with neuromuscular disorders with the main objective of funding research to quickly find a cure for neuromuscular diseases.
The society has 856 regular members with various forms of muscular and neuromuscular diseases, and 251 supporting members. Since September 1992 a regular member of the Society EAMDA (European Alliance of Neuromuscular Disorders Associations), which is based in Malta and the World Association WANDA (World Alliance of Neuromuscular Disorders Associations) based in Australia. Through the National Council of Disabled People of Slovenia (NSIOS), the Association of Slovenia accepts the European Union, a member of the European Disability Forum (EDF).
President: Boris Šuštaršič
Contact Person: Ivo Jakovljevic
Dystrophy Annihilation Research Trust was formed in 2012 with the aim of providing solace and support to the families of children with Muscular Dystrophy.
To bring together all Muscular Dystrophy parents and patients, to create awareness of Treatment, Drug Trials and facilitate research in finding solutions to eradicate Muscular dystrophy.
The Trust's vision is to empower research for realizing the potential for full rehabilitation of those diagnosed with Muscular Dystrophy.
The Estonian Association of Muscular Disorders (EAMD) is a non-profit organization which aims at improving the life standards of people with muscular disorders.
EAMDA is an international non profit association who’s member organisations work together to give people with NMD as normal a life as possible. We do this by building a strong organisation that represents people with NMD throughout Europe.
The European Organisation for Rare Diseases (EURORDIS) is a non-governmental federation of nearly 480 rare disease organisations in 45 different countries (of which 25 are EU member states), covering over 1,200 rare diseases. It is therefore the voice of 30 million patients affected by rare diseases throughout Europe.
FFM was founded in 1981 the Association's patron is the Princess Martha Louise.
Through 13 regional organizations, the association helps inform those affected with muscle disease and their families, whilst also working for their rights and interests.
The Favaloro Foundation was established in 1975 as a not-for-profit organization by René G. Favaloro on his return to Argentina from the United States , with three main goals: providing medical care, generating scientific knowledge, and educating health professionals. Favaloro was following the principles of the Cleveland Clinic, where he had worked for ten years. There he had developed the “bypass” or coronary artery bypass graft (CABG), the fundamental work of his career and a technique that changed radically the history of coronary disease.
gmp-orphan (GMPO) is a drug development specialty pharma focused on rare diseases and unmet medical needs. To drop development cost and time to market, GMPO repositions off-patent drugs already approved for other niche medical uses.
GMPO benefits from a team of experienced R&D and business development biopharma professionals, as well as a solid international scientific & business advisory board.
Hungary Muscular Dystrophy Association National Federation of the Association of Persons with Disabilities
The Institute for Neuroscience and Muscle Research (INMR) investigates causes, consequences and therapies for specific inherited and acquired neurological diseases such as the muscular dystrophies, peripheral neuropathies, neuroinflammatory disorders such as multiple sclerosis and neurofibromatosis type 1.
The INMR is a multi disciplinary team involving over 40 clinician, research scientists, genetic counsellors, physiotherapists, occupational therapists and psychologists, who care for over 1800 patients and their families.
ICH was established in 1945 and, in 2006, joined UCL's newly-formed Faculty of Biomedical Sciences, becoming the largest of its 14 Divisions and Institutes. ICH has maintained a particularly close relationship with GOSH throughout its sixty-three year existence.
Italfarmaco, one of the leading Italian pharmaceutical groups, operates in both the pharmaceutical and the fine chemical industries.
President of Italfarmaco Holding is Francesco De Santis has been involved with Italfarmaco since 1981. He has personally driven the foundation and internationalization process of all of the group's companies.The Italfarmaco Group now markets ethical products in Italy, Switzerland, Spain, Portugal, Greece, Russia, Turkey, Chile, Peru, Morocco and also for the subsidiary Chemi SPA in USA and Brazil. The company employs more than 2100 and total turnover exceeds 500 million euros.
Call +39 02 64431
This civic association, which was established in 2001 with an aim is to organize and develop prevention programs for families and their action to defend the public's sense of family and irreplaceable role. They organise short courses and supply e-learning materials for those affected by spinal muscular atrophy.
Lihastautiliitto ry is a national disability organization whose mission is to help members to have a diverse and a good life. The federation is composed of 12 local associations and approximately 3000 members.
Activitly collaborating with "Lopselis" the well respected centre for chidlren with neuromuscular diseases in Kaunas, Lithuania. With the help of Dr. A Prasauskiene the director of Lopselis our aim is to establish a centre for neuromuscular diseases in Lithuania.
Additional Contact Details
Eiveniu, 2 KAUNAS 3007
Tél : 370 7 228 753
Fax : 370 7 220 733
Association Luxembourgeoise (ALAN) helps people with neuromuscular and rare diseases. ALAN asbl has supported people with both rare and neuromuscular diseases since 2005.
A handful of mothers and fathers, grandmothers and grandfathers in 1997 established Marathon the association for children suffering from muscle disorders. "We chose the name Marathon because it is a very, very long fight will be against the disease. And we are therefore delighted to be very persistent," said Heinz Rathmann, a concerned grandfather.
The organization of people with special needs MOTUS VITA is the volunteer organization, established in 2009 by a small group of people in Riga, Latvia, to support people with neuromuscular diseases (NMD) and their families.
MOTUS VITA provides high-grade system of support, and also gives the practical information and the basic services for people with neuromuscular diseases.
The primary objective of the organization MOTUS VITA is provide support for people and their families who are affected by neuromuscular diseases (NMD).
Muscular Dystrophy Association Cyprus (MDA Cyprus), was founded back in 1986 and its members are children and adults from all over Cyprus.
The Russian Muscular Dystrophy Association website will be available in the near future. When launched it will provide information concerning muscular dystrophy, recent scientific and clinical achievements.
United States of America
MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education.
Alternative contact details
Str,Ardian Krasnici N:6/22
Tel: +381 38 247 721
Mob:+377 44 332 480
The Muscular Dystrophy Association of New Zealand aims to provide personal support and information, as well as influence and promote equality of opportunity for those New Zealanders living with neuromuscular conditions.
Serbia & Montenegro
Their mission is to improve the quality of life in all social trends and processes of everyone affected by muscular dystrophy, provide information, and organize cultural, sports and entertainment events to assist in education and employment.
MD associations have been serving people with neuromuscular disorders in Australia for over 50 years, the first established in South Australia on 4th August 1954.
MDF INDIA is the single largest organization of / for the Muscular Dystrophy (MD) patients and parents in the country. It serves more than 3000 patients who are primarily in Tamil Nadu, and does have limited presence in Karnataka, Andhra Pradesh, West Bengal, Chattisgarh & Odisha.
The Muscular Dystrophy Group of Malta was set up in 1980 by a group of parents of children with various forms of muscular dystrophies with the primary aim of getting together to share experiences.
Muscular Dystrophy Ireland (MDI) is a voluntary organization, which was established in 1972 to support families who had a member with muscular dystrophy. Since then it has grown considerably and it now has a membership of over 560 members and a network of branches throughout Ireland.
Muscular Dystrophy UK has funded high quality research into neuromuscular disorders for the last 50 years. They provide free care and support for babies, children and adults affected by muscle disease, fund world-class research to find treatments and cures, provide grants towards equipment and campaign to raise awareness and bring about change.
Muscular Dystrophy Foundation's history dates back to 1971 when the association was formed in protest that there was virtually nothing done for people with muscular dystrophy. The disease at that time considered hopeless. Moreover, many left for a disenfranchised lives in institutions.
The Swedish Association of Persons with Neurological Disabilities is the association for persons with neurological diseases or injuries and their relatives and friends. In Sweden, over half a million people live with neurological diseases such as Multiple Sclerosis, Parkinson’s disease, Stroke or ALS.
NicOx is building an international late-stage development and commercial Ophthalmology Company based around therapeutics, diagnostics and devices.
Call +33 (0)4 97 24 53 00
Orphanet is led by a European consortium of around 40 countries, coordinated by the French team. National teams are responsible for the collection of information on specialised clinics, medical laboratories, ongoing research and patient organisations in their country. All Orphanet teams respect the same quality charter. The French coordinating team is responsible for the infrastructure of Orphanet, management tools, quality control, rare disease inventory, classifications and production of the encyclopaedia.
The Austrian Society for Muscular Dystrophy Association is a non-profit organization which was founded in June 1976, by a private initiative. Goals include the best possible care for those affected from a medical-therapeutic and psycho-social perspective, as well as the promotion of research and treatment of various muscle diseases.
Herr Hans Pater Spak (President)
The Austrian Muscle Research (ÖMF) was established by Mr. Dkfm. Wolfgang Samesch in 1989 and supports projects for the research of muscle diseases.
Paratek Pharmaceuticals, Inc. is a privately held biopharmaceutical company headquartered in Boston, MA, which is engaged in the discovery and commercialization of new therapeutics that treat life threatening infectious and other serious diseases.
United States of America
PatientCrossroads allows any orphan disease population, regardless of size, to collect patient data that can identify clinical trial candidates and fuel research. By assembling many small patient registries into a common data repository economies of scale can be realized and researchers will have the ability to look beyond a single gene/indication which may reveal non-obvious associations between genes and diseases.
RENBRAPEC (Brazilian Network for Clinical Research on Neuromuscular Diseases) was created in August, 2010, during the Brazilian Congress of Neurology, in Rio. In June of the same year it was held in Sao Paulo, Brazil, an International Conference on Neuromuscular Diseases with the help of the TREAT-NMD Directors. Brazilian neurologists from all over the country attended that meeting and were motivated to create a national association. We intend to estimulate the organization of regional outpatient clinics for neuromuscular disease (NMD) patients, according to international standards of care; to train physicians to make early diagnosis of NMD and to start in a very near future international cooperative multicentric clinical studies.
National Association for Disabled Children and Adolescents, RBU, is a family organization that offers members support, fellowship and information. RBU power and influence of disability policy issues primarily from a child and family perspective. RBU is all over the country and has about 12 000 members.
The first meeting of Association of Muscular Dystrophy took place in 1974 with the aim of tackling problems such as legislative policy, diagnosis and treatment, accessibility barriers whilst also encouraging education and employment of those affected by various dystrophies.
The Swiss Society for Muscular Dystrophy SGMK ZEWO is a certified nonprofit organization , which in German, Romansh and Italian-speaking Switzerland's interests and concerns of people with muscle disease represents.
President: Dr. Jacques Rognon.
The Swiss Foundation for Research on Muscle Diseases implements research in Switzerland since 1985 through research grants that are carefully selected by a dedicated scientific board. The Foundation organizes and sponsors also the Swiss meeting on Muscle Research, that takes place every two years, and participates to the costs of several additional scientific meetings and workshops on muscle research in Switzerland.
This is the only specific muscular dystrophy organization in Slovakia, members are try to provide training and provide experience, every effect is made to mitigate the consequences of disability.
The Polish Association for Neuromuscular Diseases is a non-governmental organization with nationwide coverage, which was founded in 1988. It brings together people affected by neuromuscular diseases (dystrophy, spinal muscular atrophy, myasthenia gravis, myopathies, polyneuropathies, amyotrophic lateral sclerosis, etc.), their families, doctors and physiotherapists and a wide range of people who feel the need to help people suffering from muscular diseases.
The organisation’s mission is to promote International disability rights along with the full and effective social participation of those patients with muscle disease. The organisation also aims to properly inform patients, encourage physical social interaction whilst promoting spiritual well being.
The Ukrainian Muscular Dystrophy Association ERB is a non-governmental and non-profit organization registered by the Department of Justice of Ukraine. The Association was founded by a small group of people who were affected by the disease. From a tiny organization they have grown into the Ukrainian MDA and have many branches across the country.
For almost fifty years UILDM is the national association of reference for people with muscular dystrophies and other neuromuscular diseases.
In the 50 years of its existence, the Institute has become an internationally recognized institution, which with its expertise, experience, research and frequent participation of its experts at important international conferences and workshops, promotes the development of rehabilitation.
Contact Person - Dr. Ales Praznikar
The Vereniging Spierziekten Nederland (VSN), is an active and dynamic association of and for people with a neuromuscular disease. The VSN aims at protecting the interests of its members. Its activities consist of providing information, organising mutual support and stimulating scientific research. The VSN was one of the founding members of EAMDA and the ENMC and favours international cooperation in the field of research and the development of therapies.
Nema non-profit association representing the Flemish neuromuscular disorders is a patient support / self-help group which, since 1987 committed to the wellbeing of people with neuromuscular disease (NMA) .
The Former Yugoslav Republic of Macedonia
The association's mission is to improve the quality of life in all social trends and processes of those suffering from muscular dystrophy and their families. Provide information organize cultural, sporting and entertainment events to assist in education, employment and the like.