Befrienders are themselves affected members, who offer personal support. We know how isolating it can feel to be affected by a rare disease, or have a child who is affected and sometimes speaking to someone who has been through something similar can be a comfort.

We will try to match you to a Befriender based on similar personal circumstances, though this may not always be possible. However, all of our Befrienders are ready to listen and support you.

The Befriender can contact by phone or email, and can stay in contact for as long as you both agree to. 

If you are interested in getting in contact with one of our Befrienders please contact our helpline: 0345 389 9901 or email us


Useful links


For advocacy

For sibling support

For about the disease



Our helpline is open 9-5pm


0345 389 9901

Out of hours support line open

5pm-10pm Monday-Friday and weekends: 07712 653 258 or

Contact us

Complete the form below to send a message to the advocacy team

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