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UCL Queen Square Institute of Neurology

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Ehler's Danlos Syndrome

Medline NLM definition: A heterogeneous group of inherited COLLAGEN DISEASES. The most common manifestations of Ehlers-Danlos Syndrome are hyperextensible skin and joints, skin fragility and reduced wound healing capability

Ehlers-Danlos syndromes: information from the NHS website

Ehlers-Danlos Syndrome: information from Patient UK website

Ehlers Danlos Syndromes: information from NORD, the National Organization for Rare Disorders (US site)

PubMed Medline search on Ehler's Danlos Syndrome

Support Groups

Ehlers-Danlos Support Group
Ehlers-Danlos Support UK is a registered charity supporting people who suffer from Ehlers-Danlos Syndrome (EDS).

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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