Rare diseases18 May 2025Mum's relief over 'brutally unfair' drug accessPhoebe wants other children to be able to have the same treatment for Batten disease as her daughter.18 May 2025Coventry & Warwickshire17 May 2025'I'm running 5 marathons to aid a cure for my son'Dan Booth is running five marathons in five days for son Charlie, who has a neurological condition.17 May 2025Stoke & Staffordshire17 May 2025New drug given to patients with rare lung conditionInfliximab is the first new drug for patients with pulmonary sarcoidosis for 50 years.17 May 2025Oxfordshire16 May 2025Relief as treatment for rare condition is extendedBrineura has added years to the life of an eight-year-old boy with Batten disease, his mother says.16 May 2025Northamptonshire13 Mar 2025Threat to son's treatment for rare disease 'agony'Isaac Tilley, eight, could lose access to Brineura, which slows the progress of Batten disease.13 Mar 2025Northamptonshire12 Mar 2025Mothers rally and urge action over access to drugThe parents are worried as access to the drug to slow the progress of Batten disease is set to end.12 Mar 2025England2 Mar 2025Family hopeful of treatment for son's rare conditionThree-year-old Beau Kent was born with a rare condition meaning he stops breathing when he sleeps.2 Mar 2025Sussex28 Feb 2025Oldest patient with MSMD welcomes new networkGeraldine hopes the new NHS network can further diagnosis and treat the rare genetic disease.28 Feb 2025England21 Feb 2025Parents' fears over loss of Batten disease drugThe roll-out of approved treatment for a childhood neurodegenerative disease is due to expire in May.21 Feb 2025England...