The Spinal Muscular Atrophy Support UK foundation is an established charity that supports and empowers anyone affected by SMA. They are advocates for better services, raise public awareness and fund research-related initiatives.
The SMA Trust was founded in 2003 and currently funds over 75% of UK charity-funded research in SMA. The charity is also a driver of international collaboration through their membership of SMA Europe and close relations with the US.
TREAT-NMD is a network for the neuromuscular field that provides an infrastructure to ensure that the most promising new therapies reach patients as quickly as possible. Since its launch in January 2007 the network’s focus has been on the development of tools that industry, clinicians and scientists need to bring novel therapeutic approaches through preclinical development and into the clinic, and on establishing best-practice care for neuromuscular patients worldwide.
SMA Europe is an umbrella organisation, founded in 2006, which includes Spinal Muscular Atrophy (SMA) patient and research organisations from across Europe.
Cure SMA provides a support system to the spinal muscular atrophy community. For those newly diagnosed, they offer a number of resources, including care packages, information packets, and a family support staff. Cure SMA funds a comprehensive research programme focused on developing treatments for all types and ages of SMA. They host the largest annual SMA conference in the world for families and members of the scientific community.
SMA Switzerland is a patient organisation that aims to follow the latest trends in research, inform members and advocate the concerns of patients. The organisation does this by networking with authorities and politicians, exchanging and collaborating with pharmaceutical companies as well as working with patients and relatives.
The SMA Foundation has invested millions in the development of critical, validated research tools and other drug discovery resources. It was established in 2003 by Loren Eng and Dinakar Singh, parents of a child with spinal muscular atrophy.
Families of Spinal Muscular Atrophy Canada Society is the national charity dedicated to supporting Canadians affected by Spinal Muscular Atrophy and supporting research to find a cure or treatment for SMA.
Canadian Organization for Rare Disorders (CORD) provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.
The Association Against Spinal Muscular Atrophy Type 1 (ECLAS) was founded in January 2013, by a group of parents wishing to join forces, talents, certainties and questions for the benefit of babies and parents who face this disease. This French association includes thousands of volunteers, patients and their families as well as professionals.
Initiative SMA works in association with the German Society for Muscular Dystrophy. First established in 2001 by Dr Inge and Klaus Schwersenz, parents of two children with SMA. Financed by donations, the aim of the organisation is to support the development of a therapy for SMA through the exchange of information and promotion of research.
SMA Foundation is a Polish organisation founded in 2013 by parents of children with SMA, who decided to join forces to build a network of support for other parents. The main aims of the foundation is to increase public awareness, particularly with regards to genetics, diagnosis, standards of care and management options.
The Princess Beatrix Fund has one major goal: to work for all muscle diseases in the world. The organisation’s main tool in this struggle is scientific research. They finance research to help look for therapies as well as quality of life for patients.
Spinal Muscular Atrophy Foundation is a private non-profit foundation established in Vilafranca, Spain in 2005. The organisation’s aim is to contribute to improving the quality of life of those affected by SMA. They do this by supporting research at both the national and local levels, in order to bridge the gap between today and a cure for SMA.
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 733 rare disease patient organisations in 64 countries. They are the voice of 30 million people affected by rare diseases throughout Europe.
Global Genes is one of the leading rare disease patient advocacy organisations in the world. Committed to eliminating the challenges of rare disease, Global Genes builds awareness, educates the global community, and provides critical connections and advocacy resources.
Orphanet is the reference resource for information and knowledge on rare diseases for all audiences, aimed at improving the recognition, diagnosis, care and treatment of rare diseases.
Rare Diseases International (RDI) is the global alliance of people living with a rare disease of all nationalities across all rare diseases. RDI brings together national and regional rare disease patient organisations from around the world as well as international rare disease-specific federations to create the global alliance of rare disease patients and families.
The Association of Families of SMA is a non-profit organization founded by a group of parents of children with SMA who have decided to share their own experience in order to contribute information about the disease to help research endeavours. Founded in 2001, this Italian-based Association has grown considerably over the years.