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Better care for rare diseases

The UK's first strategy to build understanding of rare diseases has been unveiled by the government. 

The UK Rare Diseases Strategy claims that health and social care professionals need better training and education to ensure earlier diagnosis and access to treatment. 

Every patient should be given a clear, personal care plan, bringing together health and care services, the strategy claims. 

And patients with rate diseases will be “put first”, by strengthening the links between research and treatment. 

Health Minister Lord Howe, who announced the strategy said: "Millions of people in the UK are affected by the thousands of different kinds of chronically debilitating illnesses that are defined as rare diseases. So when looked at as a whole, rare diseases are not rare and our focus should be on making sure that no one who suffers from one is left behind.

"The UK already leads the way with ground-breaking research to better understand and treat these illnesses and this strategy will help cement our reputation as the driving force in this field."

A rare disease is a life-threatening or chronically debilitating disease that affects five people or fewer in 10,000, and requires special, combined efforts to enable patients to be treated effectively.