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Spinal Muscular Atrophy

Spinal muscular atrophy: information from the NHS website

Spinal Muscular Atrophy: factsheet from NINDS, the National Institute of Neurological Disorders and Stroke information (US site)

Spinal Muscular Atrophy: information from NORD, the National Organization for Rare Disorders (US site)

Kennedy's Disease: factsheet from NINDS, the National Institute of Neurological Disorders and Stroke information (US site)

Kennedy Disease: information from NORD, the National Organization for Rare Disorders (US site)

PubMed Medline search on Spinal Muscular Atrophy

Support groups

Spinal Muscular Atrophy UK
This charity provides support and information about the condition and the latest developments with new treatments. They have been supporting individuals, families and research for over 30 years: 'The Jennifer Trust for Spinal Muscular Atrophy' was set up in 1985. In April 2014 it changed its name to 'Spinal Muscular Atrophy Support UK’. The SMA Trust was set up in 2003. In 2018, the two charities merged to form Spinal Muscular Atrophy UK.

Kennedy's Disease UK
The only UK based charity for Kennedy’s Disease (KD); a non-profit organisation run by volunteers and sufferers. They aim to raise awareness of the disease and the effect it has on sufferers, carers, family and friends. There is only one centre carrying out vital research in the UK and they hope their efforts will help the National Hospital for Neurology and Neurosurgery in London to find a cure for the disease.

Brain and Spine Foundation
Information on living with a neurological condition and on diagnosis. There are publications and resources. The useful glossary of neurological conditions (under 'Information and support') includes links to some other organisations as well as to Brain and Spine Foundation information.

Healthtalk: nerves and brain
Personal experiences of people living with various neurological conditions.

Neurological Alliance
Collective voice for 80 organisations, including stroke and brain injury. Organisations are listed at https://www.neural.org.uk/our-members/, a good place to start if looking for information on those conditions. Site also includes information about living with a neurological condition, a glossary, and information about onset and diagnosis as well as a small set of real life stories.

NHS Inform: brain, nerves and spinal cord 
NHS inform is Scotland's national health information service, with the aim of providing the people in Scotland with accurate and relevant information to help them make informed decisions about their own health and the health of the people they care for.

 

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