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 …

Why high-tech medical innovations just don’t match the harsh reality of health & disability funding

As soon as they became our neighbours, our mother sent us round to play with the kids next door. Vivacious twin girls, of no interest to me, and the boy. …