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The Government is working to improve the lives of all those affected by rare diseases, including sickle cell disease, through the implementation of the United Kingdom Strategy for Rare Diseases. The Strategy includes specific recommendations related to raising awareness of rare diseases and genomics across the healthcare professions.
Patients with sickle cell are provided with information about the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS) which is a registry of rare disease patient information. NCARDRS was established by Public Health England part of implementation of the UK Strategy for Rare Diseases and will support research into rare diseases including the provision of longitudinal data.