Our Misssion, Strategy & Values

With over 2800 members in the UK and worldwide, the charity aims to raise awareness of this relatively unknown condition throughout the general public as well as the medical community.

Cavernoma Alliance UK (CAUK) is the largest UK charity providing comprehensive and holistic support to those with cavernoma and their families. We aim to reach everyone diagnosed in the UK with a cavernoma and be there to support those who need us. Over one third of those diagnosed in the UK join us each year. We have over 2,500 members.

Our charitable objects are;

  •  To promote and protect the physical and mental health of those with cavernoma through the provision of support, education, research and practical advice;
  • To advance the education of the general public in all areas relating to cavernoma.

Our Strategy

Our new Strategic Plan has three objectives:

  1. Care: To build on growth of online engagement, ensuring greater opportunities for home-bound or mobility impaired members to engage. To go from one third to one half of patients joining us.
  2. Response: Transition from activity to impact focus, engaging with opportunities where we can have the biggest impact on clinicians and their treatment of patients e.g. online campaigns, research evidence-based treatment, spread best-practice.
  3. Cure: To help find a cure by 2030 by promoting research and subsequent application, contributing to an patient registry and readying patients for their input

 We deliver our strategic plan through five programmes, 

  1. Direct support for adults (68.4% of our membership base are adults with cavernoma).
  2. Direct support for children and young adults with cavernoma and their families (5.4% of our
    membership are parents of children with cavernoma).
  3. Raising awareness of this rare condition with medical and social care professionals.
  4. Aiding research to improve the care and treatment of cavernoma and find a cure.
  5. International Collaboration.

Our Mission

To work to find a cure for cavernoma, improving treatment and supporting those affected by cavernoma along the way

Our Values

  • Empowering
  • Inclusive
  • Informative
  • Trustworthy
  • Confidential
  • Approachable

Get in touch with us

available from 10:00 – 16:00

Email hello@cavernoma.org.uk