SMA Belgium is an umbrella organisation created by the SMA working groups of Spierziekten Vlaanderen (Flemish neuromuscular organisation) and ABMM (Walloon neuromuscular organisation).
SMA Belgium is dedicated to building communication networks between families with SMA about progress in scientific research, available treatment and public assistance.
Finally, but not least, to strengthen the patient’s voice in the drug development process, to collaborate with various stakeholders to optimise the drug-development path from the laboratory to the patient.
The Czech SMA Patient Organisation – SMÁci, supports patients and their families with their SMA quest, striving to establish a communication channel between all parties involved and helping to achieve a smooth execution of all available steps to improve quality of life. Since its creation in 2016, SMÁci has had a key role in advocating for access to treatment for people with SMA in Czech Republic.
The Danish Muscular Dystrophy Foundation unites people and relatives with all types of neuro muscular diseases. The organisation consists of four units: a member based association; an event and fundraising organisation which organises a music festival and a circus-theatre; a highly specialised centre for neuromuscular diseases; and the Musholm holiday, sports and conference centre, internationally awarded for its outstanding accessibility and run as a social enterprise. Together, these four units work on advocacy, awareness, research, and empowerment to improve treatments and create opportunities for living a good life with a neuro muscular disease.
SMA Finland was founded in 2018 by group of active SMA patients and parents with children who have SMA. The primary goal of the association is to provide access to medical treatment to all SMA patients, despite the type or age.
Other important goals for SMA Finland are also to improve the quality of life of individuals with SMA and to create awareness about SMA with authorities, healthcare professionals and the general public.
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.
The German Society for people with Muscular Diseases (DGM), founded in 1965 at the initiative of parents, is the oldest and largest patient organisation for people with muscular diseases in Germany. Its main objective is to the advance research in the field of muscle disorders and treatments. DGM provides advice, assistance, and the opportunity to exchange experiences with other stakeholders, also being committed to the concerns of the other stakeholders within health policy.
MDA Hellas, focuses on improving the lives of individuals with neuromuscular disorders by working with government agencies, universities and various institutions and individuals to further research on neuromuscular disorders and to promote early diagnosis. The organisation runs events and education programmes for patients focused on advocacy, clinical trials, novel medicines, and technologies while also supporting and educating doctors. MDA Hellas has established and supports 3 Specialised Neuromuscular Units in Greece.
FSMA Iceland was formally established in 2002 and is an association of families and individuals who suffer from Spinal Muscular Atrophy (SMA). Its purpose is to protect the interests of the persons with SMA and their families and to contribute to finding a cure. FSMA does this by fundraising to support research into the science of the disease; providing information to members of FSMA in Iceland on the progress of research on the disease, as well as other useful information related to the disease; to hold meeting on issues SMA; to disseminate information in the media and to the media about issues pertaining to SMA; to contribute to the transportation of individuals with SMA and their families.
The Spinal Muscular Atrophy Ireland Foundation is the collective voice for the adults and children with SMA in Ireland. The organisation supports people and families by: providing information and a network of contacts; raising awareness of SMA and campaign for screening; lobbying Government and the Health Service for access to treatment; liaising between pharmaceutical companies and patients/families; facilitating ongoing research by coordinating patient volunteers; and maintaining connections with SMA organisations in other jurisdictions.
The Association of Families of SMA is a non-profit NGO founded in 2001 by a group of parents of children with SMA. The Association is a point of reference for medical and scientific researchers and for all the families of children with SMA. It aims to inform families about progress in scientific research, available treatments and assistance to which they are entitled to from public institutions; to promote and support scientific research in SMA and possible therapies; to communicate developments in clinical trials of drugs and therapies as well as the participation of Italian research organisations in clinical trials for SMA abroad, also solving legal problems, bureaucratic and organisational related to such participation.
The Association of persons with Spinal Muscular Atrophy STOP SMA is an association of citizens, established for the purpose of realising, protecting, and promoting the rights and interests of the persons with SMA and their custodians. This includes their rights and interests regarding health protection as well as their rights to treatment, social protection, education, and employment.
The Prinses Beatrix Spierfonds, a foundation for over 200.000 people with a neuromuscular disease in the Netherlands, aims to eliminate all neuromuscular diseases by means of scientific research. The organisation finances and stimulates research aimed at developing therapies for neuromuscular diseases. Because this can be a long and strenuous process, the organisation simultaneously supports research in improving quality of life.
Spierziekten is an association of and for people with a neuromuscular disease. Its activities consist of providing information, organising mutual support, and stimulating scientific research, including international cooperation in the fields of research and of the development of therapies. Spierziekten runs a series of initiatives focused on the improvement of social and medical care for people with neuromuscular diseases and organises various information and dissemination activities each year. The association collaborates closely with relevant experts to improve diagnostic procedures, care, rehabilitation, and genetic counselling while also maintaining a network of regional groups and national diagnosis-bound support groups.
The Polish SMA foundation, formed by parents of children with SMA, has the following goals: to conduct activities for people with SMA and their loved ones, aimed at combating exclusion, increasing independence and improving their quality of life; to increase the awareness of SMA, by disseminating knowledge in genetics, diagnostics, standards of care and treatment methods; to increase the availability of methods and techniques for diagnostic, therapeutic, rehabilitative and related products and technology solutions; to support system solutions, particularly in health care and social security, taking into account the needs of people with SMA and their loved ones.
APN focuses on creating and promoting better quality of life for people living with neuromuscular diseases. Its members are people with muscular diseases, family members, doctors, and other health professionals. APN’s actions include advocacy, direct support to people with neuromuscular diseases and their members and support to medical research.
SMACARE Association is a non-governmental and non-profit organisation that aims to protect the rights and interests of people affected by spinal muscular atrophy and to improve their lives. The association was founded at the initiative of some parents whose daughter is affected by Spinal Muscular Atrophy Type II. Helped by relatives and friends and encouraged by doctors decided to start on this road to change the mentality of Romanians about people with disabilities, to make this disease known and to build a communication network between people with muscular spinal atrophy, their families and doctors.
Asociatia SMACARE aims to:
Improve the quality of live of individuals with Spinal Muscular Atrophy;
Raise awareness about Spinal Muscular Atrophy with the general public, healthcare providers, governmental organisations;
Build a community for Spinal Muscular Atrophy families and individuals;
The SMA Family Foundation Russia, established by parents of children with SMA, supports and empowers families with people living with SMA. The Foundation focuses on advocating for better services, raising public awareness and funding family’s special needs that are not reimbursed by national healthcare service. Its main goals are: to build strong basis for the improvement of the quality of life of individuals with SMA and their families; to fulfil the strong need of information and best care practices; and to promote the development of medical and non-medical care for SMA.
SMA Serbia, established by parents of children with SMA and adults living with SMA, aims at increasing the quality of life of those living with SMA and their families. The association strives to raise public awareness, to protect the interests and the rights of people with SMA and their families and to improve their social care and medical support. The aim is to build a community for SMA families and individuals, to advise them and to make their lives easier. SMA Serbia’s final intention is to get the right treatment for every single patient, children and adults, so that they grow, improve and prosper in many fields in life.
Spinal Muscular Atrophy Foundation (FUNDAME) is a non-profit, private foundation, established in 2005 and made up of patients affected by SMA and their relatives. FUNDAME strives to find ways to improve the quality of life of those affected by SMA and to promote research into this disease.
FUNDAME supports research at both national and international level, in order to bridge the gap between today and the day a cure for SMA is available. In the meantime, FundAME seeks ways to improve the quality of life of those affected by the disease.
NSMA is a patient association which aims to bring together people who work and live with SMA in order to exchange, assist and inform; to be the natural platform for exchange and support for people living or working with SMA in Sweden; to raise awareness about SMA in Sweden; to influence public opinion and policy makers in different social and health care organisations on issues related to SMA; and to establish a Swedish care program for SMA with information and guidelines for different treatments.
SMA Schweiz operates to develop and optimise therapies for people with SMA. The goals of SMA Schweiz are to strengthen the patients’ voice in the drug development processes, to collaborate with various stakeholders to optimise the drug-development path from the laboratory to the patient, and to educate people affected by SMA and their families, as well as the general public.
CSMA unites both parents of children and people with SMA to foster exchanges of ideas to solve, at least partially, existing problems. CSMA also supports the maintenance of a national registry of patients with SMA and provides information on SMA care related topics.
SMA UK was established in 1985 by a mother whose baby died aged 7 months from Spinal Muscular Atrophy Type 1. She set up the charity under the name of ‘Jennifer Trust for Spinal Muscular Atrophy’, now SMA UK, to offer support and hope to other families affected by the different types of SMA. Thirty years on, the charity continues to support and empower those affected by SMA. It advocates for better services and access to new treatments so that people affected by SMA are empowered and enabled to live full lives. It is committed to help fund and facilitate research and to raise public and professional awareness of SMA.