Rare diseases17 hrs ago'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 hrs agoStoke & Staffordshire17 hrs agoNew drug given to patients with rare lung conditionInfliximab is the first new drug for patients with pulmonary sarcoidosis for 50 years.17 hrs agoOxfordshire2 days agoRelief 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.2 days agoNorthamptonshire13 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 2025England18 Feb 2025Thousands raised for 'perfect' baby born with rare condition The condition means Vinnie was born with one eye and a small jaw, as well as one of his ears being on his cheek.18 Feb 2025Wales...
