Newsletter – Summer 2026
Hello everyone and welcome to our 2026 Summer Newsletter. I hope everyone has managed to keep well hydrated (maybe not as much as the World Cup Football teams) in this unusually warm summer. A few…
Patients and families affected by cystinosis in England to gain access to life-changing treatment, Procysbi
Patients and families living in England with the ultra-rare condition cystinosis will have access to a life-changing treatment, following a recent funding decision by NHS England. The treatment – delayed-release mercaptamine bitartrate (brand name Procysbi)…