Itching & Scratching – a Column by Sophie Bourton

Alongside our daughter Eva’s diagnosis of progressive familial intrahepatic cholestasis (PFIC), we learned that our future children would have a 25% chance of having…

One difficult thing about a rare disease is that there are so many unknowns, and it’s not always obvious where the answers can be found.

My childhood neighbor was a university lecturer. One of my earlier memories of her is when she told me, “Sophie, you aren’t nosy. You’re inquisitive,…