Rare diseases2 days agoAI hope for doctor's 'most precious patient'Prof Rob Galloway hopes his charity will be help to people like his daughter, Frankie.2 days ago4 days ago'I was laughed at after jaundice turned me yellow'Lisa Woodcock has undergone two liver transplants due to a rare autoimmune disease.4 days ago20 Feb 2026'We're devastated over Batten disease drug decision'The parents of two children with Batten disease say the treatment changed everything for their family.20 Feb 202612 Nov 2025'My son, 4, has childhood dementia - I'm heartbroken'Tammy McDaid is raising funds to help her make memories with her son Tate.12 Nov 202511 Nov 2025'You have to develop strength and resilience'Rachel Hughes talks about the condition her son has, which affects about one in 14,000 children.11 Nov 202523 Oct 2025Man pleads for unaffordable life-extending drugs Darren Ashton-Lake lives with Friedreich's Ataxia and wants access to a drug to slow its progress. 23 Oct 202529 Sep 2025Mum devastated as charity base destroyed in arsonCharity says everything, including pictures drawn by children who have died, was lost to the fire.29 Sep 202522 Sep 2025'My girl can't walk or talk': Searching for answers in Wales' rare disease clusterFamilies affected by a rare inherited disease say they have had to "scramble" for information.22 Sep 202521 Sep 2025'My daughter's rare condition is killing her'21 Sep 2025...