We celebrate the rarest of days to raise awareness and provide the best possible healthcare for children and families affected by rare and undiagnosed conditions.
Rare Disease Day takes place on the last day of February each year and raises awareness about rare and undiagnosed conditions. In 2016, over eighty countries held events to celebrate the day and this year, Roald Dahl's Marvellous Children's Charity is taking part in several events to mark this rarest of days.
On Saturday 25th February, we've teamed up with the Marvellous Superstar Club, SWAN UK, and Birmingham Children's Hospital to host a special event for children, young people and families affected by rare and undiagnosed conditions.
There were lots of fun activities for those that attended and the day provided an opportunity for families to talk to one another and share their experiences. Our two Roald Dahl specialist rare disease and genetic and undiagnosed conditions nurses from Birmingham Children's Hospital also attended the event. They help by providing expert support to children and young people, coordinating their care needs.
Staff from Roald Dahl's Marvellous Children's Charity, along with several Roald Dahl nurses then attended a conference on 27th February which had a focus on developing new treatments for rare diseases and included a talk on leading the way in the delivery of paediatric care.
Today, staff from the charity, as well as some of our wonderful Roald Dahl nurses are attending the Rare Disease Day Westminster Reception. All these events have provided ample opportunity for furthering awareness and knowledge about rare diseases and supports learning and development for our Roald Dahl nurses. We can't wait to celebrate Rare Disease Day again in 2018.