Links
Information
- Cavernous Haemangioma (Cavernoma)
- An excellent leaflet on cavernomas 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.
- Cavernomas from NHS Choices
- Patient information about cavernomas from NHS Choices.
Support Organisations
- Angioma Alliance
- Our parent 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 suffers. This group works throughout the UK offering free, patient friendly information and support to all whose lives have been affected.
- AVM Survivors
- A similar US based group.
- CCM Italia
- La community italiana per per le malformazioni cavernose cerebrali
- 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.
- 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.
- 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.
Research
- The International Cavernous Angioma Patient Registry
- The Registry was created to link individuals with cavernomas to members of the research community by collecting information from individuals with cavernomas. The goal of the Registry is to facilitate discovery of a non-invasive treatment for cavernoma. Members of the Registry have the opportunity to assist in the development process as members are provided with the most up-to-date information about research studies and clinical trials seeking participants.
Genetic Testing
- 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.
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
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.
- Epilepsy Bereaved
- The leading voluntary organisation in the UK and internationally on Sudden Unexpected Death in Epilepsy (SUDEP) and other epilepsy related deaths.
- Migraine Action Association
- Migraine is a common side effect of having a cavernoma.
- Superficial Siderosis - A site for survivors
- Superficial siderosis of the central nervous system is when iron salt deposits from bleeds accumulate on the brain surface, spinal cord and or cranial nerves. As people with cavernomas often experience bleeds superficial siderosis can be a result.
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.
- Long Term Conditions Alliance Scotland
- LTCAS performs a similar function to National Voices but for Scotland. They run a self management awareness raising campaign called My Condition My Terms My Life which members may find of interest.
- Brain and Spine Foundation
- The Brain and Spine Foundation helps the 10 million people affected by brain and spine conditions in the UK.
Other
- Counselling Directory
- A searchable directory of counsellors in the UK which allows you to search for a counsellor close to you and appropriate for your needs.