We often think of rare diseases in medical terms and it’s easy to lose sight of the children and families at the heart of our work. So, for the recent charity ball hosted by Sobi, the CRDN formed a contemporary dance group – ‘Unique Feet’ – featuring children with rare diseases.
The kids rehearsed together weekly for several months, and over that time a lovely sense of community has emerged. We hope to continue this… stay tuned!
With 1 in 17 Britons born with or developing a rare disease, and with medical advances offering exciting new treatments to extend the lives of rare disease patients, we need innovative new options in holistic, patient-centred healthcare – such as rare disease specialist nurses.
Current care options for rare diseases put the burden on the patient to navigate multiple specialists, cover expensive travel and potentially spend long spells in hospital. This results in missed diagnoses, missed opportunities for treatment and leads to higher healthcare costs for patients and healthcare networks.