This week’s blog has been written by our guest Alan Thomas from the patient group Atacsia a Fi – Ataxia and Me. In this post, Alan shares his journey to setting up his own patient support group in Wales for the rare disease Ataxia. Ataxia –...
This week’s blog has been written by our guest Sue Routledge from the patient group Pitt Hopkins Syndrome UK. Sue was one of the first participants in our 2015-16 peer mentoring programme, and in this post she shares her mentoring story. I was thrilled when I...
[row][two-third] At Findacure, we believe patient groups are vital partners in addressing the challenges posed by rare diseases; they offer crucial support to individual patients and represent the patient voice in research. As a result, one of our main aims as a...
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