Useful Links

In this section we provide a list of useful links about the condition, other support organisations, and support for related conditions.

Useful Links

Partner Organisations

National Voices
Cavernoma Alliance UK is a member of National Voices (previously the The Long-term Conditions Alliance) 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 Alliance UK
The Genetic Alliance UK is a national alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders.


Neurological Alliance
The Neurological Alliance’s vision is that every person diagnosed with a neurological condition will have access to high-quality, joined-up services and good information from their first symptoms, throughout their life.


Brain and Spine Foundation
The Brain and Spine Foundation helps the 10 million people affected by brain and spine conditions in the UK.

General Information

Support Organisations

Angioma Alliance
Our sister organisation. This web site provides a wealth of information about cavernomas along with mailing list, forums and regular chat sessions.

AVM Support UK
AVMs are another sort of arteriovenous abnormality which produce similar consequences for those with the condition. This group works throughout the UK offering free, patient friendly information and support to all whose lives have been affected.

BASIC
The Brain and Spinal Injury Centre is a specialist resource for people and their families in crisis following a traumatic brain injury or neurological diagnosis. This includes people with cavernomas.

Brain & Spine Foundation
A charity providing information and support for people with brain and spine conditions.

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 cavernomas and their consequences. With its neighbour, the Institute of Neurology, it is a major international centre for research and training.

Support for Related Conditions

Ataxia UK
Ataxia means “lack of order”. People with ataxia have problems with movement, balance, and speech. Over 10,000 people in the UK have some form of ataxia and it is a problem which sometimes affects people with cavernomas.

Contact a Family
A cavernoma 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.

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 and Epilepsy Society

When a cavernoma 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.

SUDEP Action
The leading voluntary organisation in the UK and internationally on Sudden Unexpected Death in Epilepsy (SUDEP) and other epilepsy related deaths.

 

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