This week, we are marking Rare Disease Day with a special video series featuring our Rare Disease Roald Dahl Nurses, who are based at the UK’s first centre for children with rare diseases located at Birmingham Women’s and Children’s Hospital.
Waterfall House treats around 9000 children with more than 500 different rare diseases across the UK. We are proud to have innovated in this area and funded the UK’s first Rare Disease specialist nurse posts – the nurses provide vital support to families ranging from advice on benefits to liaising with the large number of healthcare professionals the child or young person is under. They also help families affected by rare and undiagnosed conditions to navigate the complexity of health and social care system. Having a child with a rare disease can be extremely challenging and isolating – read Mason’s story to find out more about how our nurses can have a life-changing impact on the family as a whole. In the videos below, our Roald Dahl Rare Disease Specialist Nurses talk about why their roles and why they love coming to work every day! The video series is part of a wider series we recently launched to celebrate the 2020 World Health Organisation International Year of the Nurse and Midwife – watch more videos here.