Services & Support

We aim to support people affected by cavernoma in a number of ways from providing information, putting them in contact with others, hosting events or simply being on the end of the telephone for a chat.

Support for you

If you or someone you know has just been diagnosed with cavernoma it can be a worrying and confusing time.

It might be a relief to have a diagnosis that explains symptoms previously experienced, or something totally unexpected.

We aim to support you by offering as much information as we can about living with cavernoma and signposting you about where to go and what to do next. 

Perhaps you might have questions to ask your medical specialist or you don’t understand what they have said. Some people find it useful to have this list of questions to ask their neurologist or neurosurgeon when they visit.

CAUK has developed special relationships with medical experts in the field of cavernoma. These experts often give up their valuable time to speak at our events to tell our members more about advances in the diagnosis and management of cavernoma.

Our services

Telephone Support

Our telephone support line is open 11am - 2pm, Monday to Friday

Email Support

You can reach us via email at any time, and we aim to respond as quickly as possible

Events & Annual Forum

We organise multiple events around the country

CaverBuddies

On going peer support when you need it most

Professional Lectures

Presentation and research events around the country

Meet Ups

Join us, and members from your local area for a coffee & chat

Webinars

Online meetings, presentations & chats providing information & advice

Therapy

Therapy for adults, children and carers to work though concerns

Carers Support

Support, chat and advice for carers of those with cavernoma

Telephone & Email Support

If you need to talk to us for information or support, our details are below. We will always do our very best to help and support you, please remember we are unable to offer specific medical advice.

available from 10:00 – 16:00

Email hello@cavernoma.org.uk

Events

More than ever before, we need to rely on our community, to get through this stressful time.

Coping with a rare condition such as a cavernoma can feel isolating at the best of times, and how much more so with this current health situation.

But although we are physically isolated, we don’t have to stay socially isolated. As a community, we can still connect, and help each other out.

Have a look at the webinars and chats listed below. More to come!

woman organising an event with two friends

Annual Forum

The CAUK Forum is always an exciting event. The Forum brings together members from all over the country enabling them to exchange valuable information and ideas in a unique and safe environment.

Where possible the Forum is a residential experience, with on campus accommodation and lunches and evening meals for socialising. 

The Forum hosts a range of important speakers, from medical specialists, to members recounting their experiences. Often, we’re able to host workshops for member and an expert panel for questions and answers.

CaverBuddies

What are CaverBuddies?

Living with cavernoma can be confusing and overwhelming. The physical and mental effects of cavernoma can leave you or people you care about dealing with emotional stress too. CAUK is establishing the CaverBuddies programme to enable our members to give and receive peer-to-peer support.

How it works

If you or someone you know wishes to talk to or meet someone who has experienced life with cavernoma and is in a similar situation, please contact us.

All enquiries and details are treated confidentially and we will only set up a CaverBuddy contact after permissions from both parties has been given.

You do not have to have a cavernoma to use the CaverBuddy programme – it is open to ALL affected by cavernoma, whether you are a family member, carer or friend.

Interested in becoming a Caverbuddy?

Click the button below to find out more about becoming a caverbuddy volunteer or requesting a caverbuddy.

Professional Lectures

people sitting listening to a presentation

Our lecturers are meetings for people affected by cavernoma that take place throughout the year in different locations.

The Lecturers are an excellent opportunity for members, patients and the general public to gain valuable information about cavernoma, through presentations delivered by neurosurgeons and other specialists, socialise with other members and share their experiences and form friendships through a mutual understanding of the condition.

Guest speakers are available for questions and answers, in both a group discussion and occasionally one to one (this is at the discretion of the speaker).

Members often find answers to questions they haven’t had the opportunity or courage to ask previously. 

Meet Ups

CAUK is aiming to establish a network of Meet Ups in the UK.

As well as occasionally having an invited speaker, Our Meet Ups are an opportunity to meet other people in the community for a chat and coffee.

So far, we have established regular meet up’s in Brighton, Leeds, Milton Keynes and hope to establish more soon.

We are looking for local volunteers to help with meet ups in other areas too. If you would be interested in arranging a meet up in your local area, please contact us.

Webinars

Our primary aim at CAUK is to provide those affected by cavernoma with relevant and up-to-date information and support.  you can access this support via many channels, including online via our ‘CAUK Virtual Support Series’. 

We host regular webinars on a variety of topics so that our cavernoma community can get together easily, without having to worry about distance and travel. 

Our support series cover a wide variety of cavernoma and CAUK related topics, whether it be a simple ‘Coffee and a chat’ session, a relevant medical or research update, or a personal story from a patient or carer. 

We even host interactive sessions for our CaverFamily community.

Our webinars are accessible free of charge to all members, whether you are a patient, family member, carer or friend.

We’re always looking for ideas on topics for presentations and for volunteer speakers to share their unique cavernoma stories – if you are have any suggestions or you would like to volunteer as a speaker, please get in touch by using the contact form below.

You can find recordings of some of our webinars on our youtube channel on the link below, 

Therapy

At CAUK we understand that the effects of living with cavernoma go beyond just the physical symptoms; coping with this chronic condition can affect your mental and emotional wellbeing too. 

Whether you have a cavernoma yourself or care for someone that does, life can often feel exhausting and overwhelming.

That’s why we offer a range of therapy services, including both one-to-one and small-group sessions, for members affected by cavernoma.

Our therapy services are run by fully qualified therapists, Robyn Hughes and Fiona Holiday, who are experienced in working with cavernoma patients, as well as parents, siblings and carers. 

For more information about what we offer and our upcoming sessions please email use at therapy@cavernoma.org.uk

Carers Support

Here at CAUK we know how important the whole family are when it comes to caring for someone with Cavernoma. We understand that having a sibling, parent or family member with Cavernoma can be challenging and stressful and can lead to feeling isolated and alone. But you are not alone.

Our Carers are very important to us and we offer a wide range of support services to help you feeling supported, listened to and most importantly, included in the Cavernoma Community.

Some of the support we offer;

  • Practical and Emotional Support.
  • School/College/Employee Information sharing.
  • Therapy – both Carers Groups and 1.1
  • Mentor Service – for young adults and teens – connecting you with other people your age.
  • Facebook Support Group
  • Caverbuddies for long-term support
  • Residentials/Weekend breaks – Opportunities to meet other families with siblings who are carers.
  • Webinars specific to carers needs
  • Networking with other organisations to share information and provide further support