Links

Information

Cavernous Haemangioma (Cavernoma): An excellent leaflet on cavernous angiomas from Melbourne Neurosurgery. This document is in Adobe/PDF format and you will need the right software to read it. Most people use Adobe Acrobat Reader which you can download for free from this web page.
Vascular Malformations of the Brain: A booklet from the Brain & Spine Foundation. It gives general information about the most common vascular malformations of the brain apart from aneurysms. It is available in both Adobe/PDF and HTML formats.

Angioma Alliance: Our parent organisation. This web site provides a wealth of information about cavernous angiomas along with mailing list, forums and regular chat sessions.
AVM Support UK: AVMs are another sort of arteriovenous abnormality which produce similar consequences for suffers. This group works throughout the UK offering free, patient friendly information and support to all whose lives have been affected.
Cavernoma Patient Forum: Set up by an Austrian working in the UK this is a new website which provides a Forum exclusively for cavernoma patients and their family and friends. The site has been developed by a small group of Europeans all of whom have been directly or indirectly affected by cavernomas. They are able to offer a choice of languages. Initially, the choice is English, German or Dutch. As the website is further developed, they hope to be able to offer more languages.
National Hospital for Neurology and Neurosurgery: The National is a leading centre for the diagnosis, treatment and care of patients with a wide range of neurological conditions including cavernous angiomas and their consequences. With its neighbour, the Institute of Neurology, it is a major international centre for research and training.

EuroGenGuide: EuroGenGuide contains information about genetic testing, counselling and research across Europe.
Directory of UK Genetics Centres: Maintained by the British Society for Human Genetics.

Different Strokes: A charity set up by younger stroke survivors for younger stroke survivors. Among other activities it runs 40+ exercise groups throughout Great Britain and Northern Ireland and a telephone helpline.
Epilepsy Action The National Society for Epilepsy: When a cavernous angioma in the brain bleeds a common consequence for the patient is epilepsy. These are two UK charities for sufferers and their web sites have a host of useful information.
Contact a Family: A cavernous angioma can leave a child disabled. Contact a Family provides advice, information and support to the parents of all disabled children. They also enable parents to get in contact with other families who've been through a similar experience, both on a local and national basis.

Long-term Conditions Alliance: Angioma Alliance UK is a member of the LTCA which is the umbrella body for national voluntary organisations in the UK working to meet the needs of people with long-term health conditions
Genetic Interest Group: The Genetic Interest Group (GIG) is a national alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders.