Living with a rare disease or condition poses many challenges. Over the past decade, improving the delivery of care for the 3.5 million people living with rare diseases or conditions within the UK has been the central focus of the work of many.
In January 2021, the UK Rare Disease Framework was published by the Government. This identified four key priorities to be addressed if continued improvement in services and support for the approximately 1 in 17 UK citizens affected by a rare disease is to be realised in the lifetime of this Framework.
The four priorities are:
1. Helping patients get a final diagnosis faster
2. Increasing awareness of rare diseases among healthcare professionals
3. Better coordination of care
4. Improving access to specialist care, treatments and medicines