ABMM, the Belgian French-speaking Association Against Neuromuscular Diseases takes part in the fight by all means against neuromuscular diseases, promotes the well-being of affected people, increases awareness, provides medical equipment, sponsors scientific research selected by its Scientific Council, organizes different interest groups, etc. It was founded more than 30 years ago out of the desire of patients to take charge themselves of their future.
The association has close contacts with the Belgian federal authorities to improve the situation of people with disabilities in general and people with neuromuscular diseases in particular, in collaboration with its Dutch-speaking sister association Spierziekten Vlaanderen. The members of the Board of Directors are all volunteers directly affected by a neuromuscular disease.
The French Muscular Dystrophy Association (AFM) federates patients with neuromuscular diseases and their parents. Thanks in great part to donations from France’s annual Telethon, the AFM-Telethon has become a major player in biomedical research for rare diseases in France and worldwide. It currently funds about 37 clinical trials in different genetic diseases affecting the eye, blood, brain, immune system, and muscles… Thanks to its Genethon research lab, the AFM-Telethon stands out through its unique ability to produce and test its own gene-based medicines.
ASRIMM (Association Suisse Romande Intervenant contre les Maladies neuro-Musicales), has been founded in 1977 by André Torchio to respond to a dire lack of information on rare genetic diseases.
The aim of ASRIMM is to defend the interests of people with neuromuscular diseases or related rare diseases and their families, to promote their inclusion and participation in working life and to improve their social, professional and medical support.
It alerts and informs the public and the authorities of the extent and seriousness of the problems raised by muscular dystrophy, at the medical as well as at the family and social level.
Cure DM provides support, raises awareness and facilitates research in the UK.
We help affected families through 1-on-1 support, active social media and private discussion pages, and organise national get-togethers for affected people, their families and carers. We advocate on committees at local, regional and national levels in the National Health Service, private organisations (including the UK registry) to ensure DM needs are considered and met. We joint-founded the International Myotonic Dystrophy Awareness Day – 15th September each year. We work directly with researchers and clinicians to facilitate the development of treatments, best practice in care, and to advance knowledge of the condition.
The German Society for people with Muscular Diseases (Deutsche Gesellschaft für Muskelkranke) was founded in 1965 as a result of parents’ initiative. Its main objective is the research into and treatment of muscle disorders. DGM includes more than 8,000 members, making it not only the oldest but also the largest patient organisation for people with neuromuscular diseases in Germany. DGM provides advice, assistance and the opportunity to exchange experiences with other stakeholders. Moreover, DGM is committed to the concerns of the stakeholders in the area of health policy and specifically promotes research in the field of neuromuscular diseases.
FMM -Fondazione Malattie Miotoniche is a non profit foundation dedicated exclusively to Myotonic Dystrophies and non-dystrophic Myotonias.
Founded on 2011 in Milan, has 3 main missions: research on myotonic disorders, information about myotonic disorders and formation of people (doctors, scientists, nurses)about myotonic disorders.
MDA Hellas, funded in 1999, focuses on improving the lives of individuals with Neuromuscular Disorders : not only on forging a lasting working relationship with government agencies and on enlisting the help of private institutions and individuals, but also on furthering research that will help fight the neuromuscular disorders. It is a non-profit Organisation with 11 staff members that supports, educates doctors, organises events and education programmes for patients in matters of advocacy, clinical trials, news medicines and technologies. The Organisation promotes clinical research and prepossess early diagnosis. It has established and supports 3 Specialised Neuromuscular Units in Greece and cooperates with Major Institutions, World Organisations for Neuromuscular Disorders and Universities from Greece and abroad.
The Muscular Dystrophy Foundation of Denmark unites people and relatives with all types of neuro muscular diseases. The organisation was founded in 1971 and was also one of the founders of EAMDA.
Today Muskelsvindfonden consists of four units: A member based association, an event- and fundraising organisation producing one of Denmark’s biggest music festival Green Concert and the circus-theatre called Cirkus Summarum, a highly specialised centre for neuromuscular diseases as well as the holiday-, sport- and conference centre Musholm, which is internationally awarded for its outstanding accessibility and run as a social enterprise company.
Together the four units of Muskelsvindfonden work on advocacy, awareness, research and empowerment to improve treatments and create opportunities for living a good life with a neuro muscular disease.
SN (The Netherlands)
Spierziekten, The Dutch Neuromuscular Disease Association
The Vereniging Spierziekten Nederland is an active and dynamic association of and for people with a neuromuscular disease. Its activities consist of providing information, organising mutual support and stimulating scientific research. Spierziekten favours international cooperation in the field of research and the development of therapies.
Spierziekten was founded in 1967 and now has approximately 9.000 members. More than 300 volunteers actively support the association’s activities. Spierziekten maintains a network of 10 regional groups and 15 national, diagnosis-bound support groups. These groups monitor international developments in the field of research, are involved in psychosocial care and provide information on technical appliances.
These groups inform their members on recent medical developments and initiate relevant research. They also publish brochures, leaflets and newsletters to inform the members.
An important part of the Association’s initiatives concerns the improvement of social and medical care for people with neuromuscular diseases. Relevant experts closely cooperate with the Association to improve diagnostic procedures, rehabilitation and genetic counselling. Concentration of care in specialised centres improves the level of care. Current areas of attention are registration of patient data, development of medical protocols/standards of care, and technical appliances.
Information: materials, webcasts, meetings, conferences
Spierziekten publishes many booklets, brochures and leaflets. They mostly concern diagnosis-specific information but also inform on general subjects such as education, respiratory support, or physiotherapy. Special information packages are available for medical professionals. Conferences, webcasts and meetings are organized yearly with more than 4.000 partcipants every year.
ASOCIACION B.E.N.E. (Basque Country)
BENE is an association of families affected by neuromuscular diseases in Bizkaia. We want to protect our offspring from the drama of neuromuscular diseases. We aim to:
Promote research and treatments. Bring together those with neuromuscular diseases in Bizkaia. Educate the affected and their families about the disease origin, treatment and investigations. Raise awareness of the public and administration. Cooperate with those entities that have the same or similar purpose.
The Myopaths Association of Cyprus was founded in 1986 and its members are children and adults from all over Cyprus. The aims of the association are to secure and provide medical care, mobility assistance and support to its members, to promote measures for more active participation of state and society in all areas related to Myopathies and to organise lectures and events to inform members about research and others issues that concern them.
The National organization for rare diseases of Serbia (NORBS) is an umbrella organization gathering associations of people living with different rare diseases. NORBS was established in 2010 with the main goal of providing a unified voice for all of the people affected by rare diseases and their families and representing them at all the different levels (liaising with physicians, institutions, patients and patient organisations, as well as with healthcare and social welfare systems).Association of Cyprus was founded in 1986 and its members are children and adults from all over Cyprus. The aims of the association are to secure and provide medical care, mobility assistance and support to its members, to promote measures for more active participation of state and society in all areas related to Myopathies and to organise lectures and events to inform members about research and others issues that concern them.