A key commitment of the UK’s Strategy for Rare Diseases is to create national registries. Better data will help us to find out how many people have each rare disease, how they are diagnosed, and how and where they are treated. This will give better information to people living with rare diseases, their doctors, and the commissioners of health services. It will mean that more people with rare diseases can be involved in research, and this will result in the development of new and better treatments. The aim of this research is to improve health for people with rare diseases.
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