XClose

UCL Queen Square Institute of Neurology

Home
Menu

Telangiectasis

Medline MLM definition: Permanent dilation of preexisting blood vessels (capillaries, arterioles, venules) creating small focal red lesions, usually in the skin or mucous membranes. The lesion may present as a coarse or fine red line or as a punctum with radiating limbs.

Hereditary haemorrhagic telangiectasia (HHT): information from the NHS website

Hereditary Hemorrhagic Telangiectasia: information from NORD, the National Organization for Rare Disorders (US site)

Pubmed Medline search on Telangiectasis
 

Support groups

The Telangiectasia Self Help Group
This group was founded in 1985 to maintain a register of sufferers and to put affected families in touch with one another.

CureHHT
Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler-Weber-Rendu Syndrome, is an inherited disease that leads to malformed blood vessels in multiple organs of the body and typically begins with nosebleeds during childhood. HHT can result in serious health problems if not promptly diagnosed and treated. This charity's mission is to find a cure for HHT while saving the lives and improving the well-being of individuals and families affected by HHT.

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.

 

disclaimer