Itching & Scratching – a Column by Sophie Bourton

After our daughter Eva was diagnosed with the liver disease progressive familial intrahepatic cholestasis (PFIC), we chose in vitro fertilization (IVF) with preimplantation genetic…

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,…