Paving the way for awareness and support. Biogen is working with a number of organisations dedicated to individuals living with spinal muscular atrophy.
The characters shown are real patients and the required consent to use their stories has been obtained from the patients and families. Photographs are for illustrative purposes only.
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Spinal Muscular Atrophy UK provides confidential emotional support, practical advice and guidance to families and adults affected by SMA. Information on our website covers a wide range of SMA-related topics including ‘living with SMA’ for parents, teenagers and adults. Established for over 35 years, we also offer opportunities to meet others virtually and, when possible, at face-to face events. Our multisensory toy packs are free of charge for infants up to 12 months of age in the UK. If your child is older, we may be able to help you access other suitable toys.
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.
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.
SMA Europe is an umbrella organisation, founded in 2006, which includes Spinal Muscular Atrophy (SMA) patient and research organisations from across Europe.
Patientenstimme SMA is (Self) Empowerment. In addition to various activities for patient involvement, there is news and information on the current development of research and treatment options, a FAQ oriented to current questions of affected persons and an overview for big and small events. "Voices" is a blog, where affected persons and relatives write their experience reports, e.g. on drug treatments or give statements on other matters.
Familles SMA France (FSMA) is an association which aims to facilitate the sharing of information and to contribute to the implementation of effective therapeutic strategies to cure Spinal Muscular Atrophy (SMA).
EAMDA (European alliance of Neuromuscular disorders associations) is a nonprofit umbrella organization that connects neuromuscular disorders associations across European Union. EAMDA’s main value is to be collective influential voice of people with neuromuscular disorders (NMD) on European level.
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.
Cure SMA Canada with initial name “Families of SMA Canada” is the national charity dedicated to supporting Canadians affected by Spinal Muscular Atrophy and supporting research to find a cure or treatment for SMA.
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.
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.
SMA Österreich is a non‐profit organization founded to represent the interests of SMA patients. The Association works on voluntary basis and brings together patients and families affected by SMA.
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.
AFM-Téléthon is composed of patients and their families who are affected by a genetic, rare, progressive and severely disabling illness: neuromuscular diseases. In order to fight those diseases, AFM-Téléthon chose to initiate innovative actions and a strategy of general interest that benefits all rare diseases and all persons with disabilities.
At Biogen, we are committed to supporting those with spinal muscular atrophy and their care team. Our hope for Together in SMA is that by providing information, we can help you get the most up-to-date care, and to help guide conversations with your doctor. Consulting with your doctor will help to develop a care plan that works best for you and your family.
We value the feedback and involvement of the SMA community as our understanding of the disease advances. We’ll be updating this site regularly with new insights and content from healthcare professionals, caregivers and people like you — because we are always Together in SMA
A major challenge for the SMA community will be to prioritize and develop the most promising therapies in an efficient, timely, and safe manner with the guidance of the appropriate regulatory agencies.1
The characters shown are real patients and the required consent to use their stories has been obtained from the patients and families. Photographs are for illustrative purposes only.
References
1. Kolb SJ. Kissel JT. Spinal Muscular Atrophy: A timely Review. Arch Neurol 2011;68(8):doi:10.1001/archneurol.2011.74
