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 …

Birmingham Children’s Hospital leads the way with the UK’s first holistic paediatric Rare Disease Centre

How many of us spend significant amounts of our time taking our children to medical appointments, often many miles from home? Often several appointments at the same clinic are staggered …

The Rare Reality: An insight into the patient and family experience of living with a rare disease

Specialised help and services for children and adults with rare or undiagnosed conditions has always been hard to find – or non-existent – and often, parent carers and patients themselves …

Our new Rare Disease columnist asks you to help get MPs interested in genetic conditions

Tania’s note: We’re delighted to introduce Genetic Alliance UK as our new columnist for rare disease, genetic and undiagnosed conditions.  Genetic Alliance UK is the national charity working to improve …

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 …