SMA patient organizations

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.

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.

A small group of parents started Families of SMA 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. 

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.

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.

The Jennifer Trust for Spinal Muscular Atrophy is the only national charity in the UK dedicated both to supporting people affected by SMA, and investing in essential research into causes, treatments and eventually a cure for the condition.

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.

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.

Since SMA Europe’s inception, there has been a determination to combine resources in Europe in order to fund the best researchers on SMA worldwide. With the help of its Scientific Advisory Board, which includes some of the best international experts on neuromuscular diseases, SMA Europe succeeded in launching a successful Call for Projects in 2008, resulting in five new research projects being undertaken internationally.

Mónica Breitman, secretary
monica@ma4.upc.edu

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 Grubu

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.