Rare diseases30 Sep 2024'We don't know how a rare illness will affect our boy'There is no cure for Wilfred's disease and doctors do not know how it will affect him later in life.30 Sep 202426 Aug 2024Our daughters’ DNA is helping other familiesA family from Northern Ireland have been speaking about taking part in the 100,000 genomes project.26 Aug 2024Northern Ireland19 Jun 2024Celine Dion diagnosis helps people with rare disorderSwansea man says Celine Dion's openness about Stiff Person Syndrome has helped to raise awareness. 19 Jun 2024Wales18 Jun 2024'We weren’t willing to end hope for our little boy'Grayson's mum describes the fight to secure long-term medication to help make his life comfortable.18 Jun 2024Wear9 Jun 2024Race to honour girl who died with rare illnessThe Blaydon Race is held in honour of Nicole Rich, 11, from Throckley, who died with Batten disease.9 Jun 2024Tyne9 Jun 2024'Doctors could not figure out my son's condition'Lucy's son lives with MPS VII and it took nine years for doctors to diagnose him with the illness. 9 Jun 2024Suffolk1 Mar 2024Charity status helps others with rare gene diseaseSienna, four, is one of only 13 people in the UK with CHAMP1, a neurodevelopmental disorder.1 Mar 2024Dorset29 Feb 2024Mum urges people to join rare disease researchLucy's 12-year-old daughter Bea has autoinflammatory disease Muckle-Wells syndrome.29 Feb 2024Oxford9 Jan 2024Boy with rare condition baffles doctorsJude Keil, 10, from Bobbing in Kent has been left unable to walk and talk by a rare nerve condition.9 Jan 2024Kent
