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.
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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.
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The Befriender can contact by phone or email, and can stay in contact for as long as you both agree to.
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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
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Helpline
Our helpline is open 9-5pm
Monday-Friday:
0345 389 9901
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Out of hours support line open
5pm-10pm Monday-Friday and weekends: 07712 653 258 or
Contact us
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Complete the form below to send a message to the advocacy team
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