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Klippel-Trenaunay-Weber Syndrome

Medline NLM definition: A rare condition usually affecting one extremity, characterized by hypertrophy of the bone and related soft tissues, large cutaneous hemangiomas, persistent nevus flammeus, and skin varices. (Dorland, 27th ed)

Klippel-Feil Syndrome: factsheet from NINDS, the National Institute of Neurological Disorders and Stroke (US site)

Klippel-Feil Syndrome: information from NORD, the National Organization for Rare Disorders (US site)

Klippel-Trenaunay-Weber Syndrome: factsheet from NINDS, the National Institute of Neurological Disorders and Stroke (US site)

Klippel-Trenaunay Syndrome: information from NORD, the National Organization for Rare Disorders (US site)

PubMed Medline search on Klippel-Feil Syndrome
PubMed Medline
search on Klippel-Trenaunay-Weber Syndrome

 

Support Groups

Klippel-Trenaunay Support Group Page (US site)
This US based website for the K-T Support Group has been established to provide information about the group and about Klippel-Trenaunay Syndrome, and to provide families, adults with K-T, and professionals with "links" to the group. The webpage supports a chat room and email list.

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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