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Make a difference to others living with, or caring for, cavernoma – CaverBuddy FAQ

Our peer support scheme – CaverBuddies – is expanding. The next online CaverBuddies training will take place on Thursday 19th Jan from 7pm. Please email for more details.

Most people have never heard of cavernoma until they, or someone they know, is diagnosed. This lack of awareness across the board, coupled with increasingly long waits between diagnostic appointments and follow up appointments with specialists, mean that many patients are left struggling to come to terms with their condition on their own.  Even after diagnosis, many patients feel that they are not taken seriously at appointments, and do not receive the comprehensive care they need.  Cavernoma doesn’t just affect patients’ physical health; living with a rare neurological condition can have significant effects on mental and emotional health too. Feeling isolated, unsupported and oftentimes dismissed by professionals only exacerbates this suffering.

This is where you can help! You can volunteer as a CaverBuddy and use your experience with cavernoma to offer support, comfort and connection to someone who might be struggling.  We’ve answered the most common FAQs on CaverBuddies so that you can simply sign up now!

What is a CaverBuddy?

A CaverBuddy is a volunteer who provides confidential emotional and practical support for other members of the cavernoma community who may be dealing with the direct and indirect effects of cavernoma. Our peer-support scheme is based on the idea that the person best placed to understand you is the person who has been through a similar experience themselves.

Why should I become a CaverBuddy?

This is a unique opportunity to really make a difference in the life of someone who is struggling to live, or care for someone, with cavernoma. Most people have never heard of cavernoma before they, or someone they love, is diagnosed – and finding someone who can relate to what they are going through can make a tremendous difference to their mental and emotional health. You can help someone navigate through the lonely world of rare disease, and your wisdom and experience of cavernoma could really help change someone’s experience for the better.

Who can become a CaverBuddy?

Anyone can become a CaverBuddy, so long as you are based in the UK and a member of CAUK. Become a member here. We are recruiting CaverBuddies who have cavernoma themselves OR who care for someone with cavernoma.

What qualities make a good CaverBuddy?

We’re looking for people who are friendly, empathetic and reliable with good communication and listening skills, and who genuinely want to help people who are new to Cavernoma or who might be struggling.

What kind of time requirement are we talking about?

Our buddies offer either short-term or one-off support, or long-term support (typically this is more of a relationship than lasts more than one month). In our longer term matches, support is arranged by both parties – it’s up to you whether you chat once a week or catch up once a month.

It sounds like you have to know everything to become a CaverBuddy?

Not at all! CAUK offers full online training, covering CAUK’s safeguarding policies and offering a full induction to support you in talking to members. All volunteers must be DBS checked, and we offer this service free of charge.

How do I become a CaverBuddy?

It’s really easy. You can sign up online today or email Tracey at
Our next online CaverBuddy training will be held on Zoom from 11am on Tuesday 11th October