Birmingham Children’s Hospital puts the fun in fundraising in its fabulous Rare Disease Day event!

I had a brilliant time in Birmingham yesterday at the Children’s Hospital where they held a vibrant and fun-filled Rare Disease Day event. Roald Dahl’s Marvellous Children’s Charity was out …

10 tips for geneticists from parents of children with undiagnosed and rare diseases

One of the biggest problems experienced by parents of children with long-term medical conditions is communicating and maintaining relationships with medical professionals. When the child has a rare disease or …