Cavernoma Alliance UK

Cavernoma Alliance UK

At a glance

Causes

  • Health and well being / research and care

Other details

Geographical remit: 
National - Britain

Objectives

Cavernoma Alliance UK (also known as CAUK) is a charity created for people affected by cavernoma – otherwise known as cerebral cavernous malformation (CCM); cavernous haemangioma;  or cavernous angioma. Our mission is to improve the quality of life for all those affected and create greater awareness of the condition.

A cavernoma is an abnormal raspberry-shaped mass of blood capillaries in the brain or spine. Around 1 in 625 people have a cavernoma. Symptomatic cavernoma are rare (c.1/12,500). When symptoms do occur they can be serious, life changing and severely debilitating: strokes, seizures, partial or full paralysis, sight, speech or hearing problems as well as other serious symptoms. Around 200–300 people are diagnosed per annum in the UK. 

Activities

CAUK provide practical information, advice, emotional support and a community for people impacted by Cavernoma. Our longer-term ambition is to improve treatment, find a cure and prevent the condition. We offer:

  •  up-to-date information about the condition
  •  free events nationally with talks by leading medical experts
  •  a supportive CaverCommunity network
  •  a support line if you need to speak to someone
  • Bespoke, specialist support for children and families impacted by Cavernoma
  • One to one peer support through our network of specially trained volunteers with lived experience
  • free membership

No current opportunities

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