SMA patient organizations
Below you will find a list of all patient organizations and support groups that cover Spinal muscular atrophy. This list deals exclusively with SMA, while organizations that deal with all neuromuscular diseases including SMA are listed on the following page.
Organizations specifically for SMA
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The Werndig Hoffman Association represents people and their families from Carei and thoughout Romania, affected by Werdnig Hoffman Syndrome and other physical handicaps caused by rare or common diseases.
The organization Kids AGR unites people with common interests, namely parents of children with spinal muscular atrophy.
They always welcome ideas from other parents, their programs, various therapies, etc., which experience has shown to be effective. The organisation believes that this kind of exchange of ideas goes some way to solving initial issues.
United States of America
Cure SMA, previously known as Families of SMA, was started by a small group of parents in 1984. They wanted to raise funds for SMA research to cure the disease, and support all affected families. Back then, very little was known about Spinal Muscular Atrophy. Very little research was being conducted. No one knew the cause of the disease let alone how to find a treatment and a cure. Patients and families affected by SMA were on their own and had little hope.
SMA Families Association is a non-profit social (NGO) founded by a group of parents of children with SMA. They have decided to share and make known outside their own experiences in order to contribute to greater information about the disease and hopefully stimulate research.
The Families of SMA Association in Israel was founded in 2002 by Mrs. Anna Sri and is a self-help non-profit organization aimed at helping patients with SMA and their families in coping with the disease. In 2007, the association has expanded its objectives and now works to increase public awareness in the medical community and among the general public to eradicate the disease and ensure better care for patients.
Fundacja SMA (SMA Foundation Poland) is a Warsaw, Poland based non-profit organisation which works with and for people affected by spinal muscular atrophy. The organisation's primary aims include: providing all necessary assistance to SMA patients and their families; supporting integration of SMA patients as valuable members of the society; spreading the awareness of spinal muscular atrophies among the medical community and the public; supporting the development of effective therapies; and influencing legislative changes to reflect the needs of people with spinal muscular atrophies and their carers.
Fundacja SMA is registered in Poland as a non-profit organisation under registry number 0000473018. European tax ID: PL5223008231.
The German Association for Neuromuscular Diseases (DGM eV) is Germany's largest and oldest self-help organization in the field of muscle diseases. It is particularly interested in research and development of effective therapies.
United States of America
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.
Meier Advocacy & Support Center for SMA is the first non-profit organization in China,which is dedicated to supporting SMA families through networking, information, and services; to improving care for all SMA patients; and to increasing the public awareness of SMA disease.
Established in 2003 the Phil & Friends organisation supports research into spinal muscular atrophy. They also help people affected by SMA directly on a day to day level and aim to preserve or indeed improve their quality of life.
SMA Europe is an umbrella organisation, founded in 2006, which includes Spinal Muscular Atrophy (SMA) patient and research organisations from across Europe.
Our aims are:
- to provide a framework to stimulate collaboration,
- accelerate translational research pathways in SMA,
- promote patient care.
Co-operation between these European organisations is meant to enhance and support the existing efforts of each association by identifying areas for collaboration that are mutually advantageous:
- to improve the quality of life of individuals with Spinal Muscular Atrophy,
- to promote the interests of SMA patients in European health policy;
- to raise awareness of Spinal Muscular Atrophy (SMA) with the general public, healthcare practitioners, scientists and industry;
- to identify, develop, promote and implement the best practice for SMA;
- to promote and sustain scientific and medical research in all fields of Spinal Muscular Atrophy;
- to increase collaboration between member countries.
Call +44 1789 801159
United States of America
The mission of the SMA Foundation is to accelerate the development of a treatment for SMA, the number one genetic killer of infants and toddlers.
The SMA Foundation was established in 2003 by Loren Eng and Dinakar Singh, parents of a child with SMA. Today, the SMA Foundation is the leading funder of SMA research worldwide–over $100M has been spent on basic, translational, and clinical research. They have invested more than $30M on developing critical, validated research tools and other drug discovery assets. The mandate of the SMA Foundation is to ensure that all of the results of their research funding are made readily available to every SMA researcher with minimal cost and obligation.
SMA (Spinal Muscular Atrophy) Organization being a voluntary event has been founded by patients and their families in Turkey.
The aim of this organization is to inform the patients with SMA about the medical news related to SMA and developed care standards for them. To give voice to patients with SMA and to create awareness to request the creation of standards -Turkey was founded.
The Trust’s objective remains constant: to be active and progressive in the search for a cure for SMA. Methods to halt and/or alleviate the disease are also sought in order to treat both children and adults with SMA to make their lives, and the lives of their families, more fulfilling.
Spinal Muscular Atrophy Support UK is a UK-wide national charity which informs, supports and empowers families and individuals affected by all forms of SMA and raises awareness of the condition. They also fund and support the research community addressing the causes, treatment and management of SMA.