Our Strategy
'Together for a Cure'
Our vision is to have a cure for cavernoma that people living in the UK can access. We have a five-year strategic plan for 2025-2030 titled ‘Together for a Cure’ to help us reach this goal!
Dr Ian Stuart founded Cavernoma Alliance UK (CAUK) after a life-changing cavernoma bleed. Struggling with a lack of information and support, he was determined that no one should face cavernoma alone. In 2005, his vision became a reality when he started CAUK.
What began as a volunteer-led helpline from Ian’s home in Dorchester grew into a national charity. Today, we support over 4,000 members with a small, remote team of part-time staff and self-employed contractors. Volunteers remain at our core, with more than 50 running the helpline, buddying, meet ups, online chats and medical alert cards.
We provide clinician-approved information via our website, social media, webinars, and annual conference, overseen by our Advisory Board. Committed to research, we proudly enabled novel gene therapy studies at University College London in 2024 by securing £100,000 in funding for UCL.
Strategy
Our strategy is a plan that helps guide us toward reaching our goals. It’s a way of thinking ahead, figuring out what needs to be done, and organizing the steps to get there. Our five-year plan ‘Together for a cure’ launched in 2025, marks a significant milestone in the charity’s 20th anniversary. Over the past two decades, we have grown from a small volunteer-led support group into a national charity that now supports thousands of people. To read the strategy click HERE.
Vision
Our vision is “To have a cure for cavernoma that people living in the UK can access”.
Aims
- To promote research to cure cavernoma and advocate for UK access to new treatments
- To improve consistency in the current diagnosis and treatment of UK patients
- To provide peer-led support to people with cavernoma and their supporters living in the UK
Objectives
Our objectives are the specific goals we’re working on to make our big vision a reality and create real change for people living with cavernoma. We have four strategic objectives:
- Support: Every person living with cavernoma in the UK will be aware of CAUK’s peer-led support, and have their request for support met as we grow existing services.
- Information and Clinical Care: People living with cavernoma and the professionals supporting them will have access to reliable, accurate and up to date information about cavernoma and will use this to improve care and support.
- Research: Both children and adults with cavernoma will have access through the NHS to new and better treatment options, which have proven to be safe and effective.
- Underpinning Operations: CAUK will be a resilient organisation that is responsive to a changing world.
Values
Collaboration – Achieving more by working together
Information – Providing reliable and accurate information
Inclusion – Embracing and valuing every voice
Empowerment – Supporting informed health decisions
Trustworthiness – Acting with integrity and reliability