Looking for rare disease support

Hi everyone,

I have a close friend suffering from a rare disease called SCA1. She's really struggling to find people who understand what she's going through and how she feels. I feel really helpless and although she can talk to me, she's really after someone who can relate personally to her experience.

She's given up so much of her life, including ever having children. She suffers depression and anxiety from it and watched multiple family members die as a result of the same diagnosis.

We've tried support groups but they tend to be poorly moderated so she's had some awful experiences.

I'd love to put my feelers out to the community to see if anyone who knows someone who may be experiencing something similar may be willing to become a sort of virtual pen pal. Or point me in the direction of any well moderated ataxia or rare disease groups.

Thank you in advance!