CVSA is an all-volunteer charity with no paid workers. We are registered with the charity commission and comply with their requirements including regular updates of our finances.

We invite you to join us!
£20 membership then annual £10 renewal.

Why Join?

By joining you make us all stronger. Working together we can do more, achieve more.

Members receive two 32 page newsletters a year packed with the latest information and medical news about CVS, as well as individual sufferers stories and articles with write ups of presentations made at our annual meeting by medical experts.

Attendance at our annual “Family Day”, a meeting where we have expert speakers talk about CVS diagnosis, latest treatments and discoveries and future developments in the field. We have previously had expert speakers from the USA, Spain, Italy as well as the UK. We bring the world’s experts to you. There are opportunities to meet other sufferers and ask the experts questions, we provide free creche facilities for children over 3. One of the most popular parts of the day is the opportunity to have individual one-to-one’s with the medical expert, a rare opportunity to meet the experts and ask your own questions. Learn more about Family Day here.

Regular email updates on breaking CVS news throughout the year.

How Do I Join?

Download our membership form here.*

Consider paying by standing order using this form.

*Gift Aid

Gift Aid is a really important contribution to our finances and is a simple and trouble free way to increase the value of your donation at no extra cost. If you are a UK taxpayer please consider signing the Gift Aid declaration on the membership form to allow us to claim 25p back from the government for every £1 donated. Please remember to let us know if your tax status changes.


Some people have set up standing orders for regular donations, other donate on a one-off basis. We can provide details if you email

Other Ways To Help

Visit our Crowdfunding page

You can donate to our charity using your Nectar points

MP Awareness

Ideally write your own letter to your local MP, to inform them about CVS, the problems it causes and about the work of CVSA UK. If you prefer, we have prepared templates that you can use to get you started. These aren’t as effective as they are so impersonal, but it is better than nothing at all. Just choose one that suits the software you use and add your name and address and that of the appropriate MP, and that’s it – job done. Please let us know who you contact and when, it helps us track the effectiveness, and we can follow up by sending leaflets, brochures and posters or talking to them if required.

Microsoft Word format download

Plain text (should work with almost anything) download

You can find your MP via this link

Or email your MP via this link

Members in Scotland can find their MSP via this link

For the Welsh National Assembly via this link

For the Northern Ireland Assembly via this link