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Government lays out rare diseases plan

pharmafile | March 5, 2015 | News story | Sales and Marketing Department of Health, NHS, UK, government, howe, rare diseases 

The UK government has set out new plans to improve the lives of patients with rare diseases by 2020.

The ‘UK Strategy for Rare Diseases’ will see all four home nations commit to a number of actions including improving patient access to their personal data, as well as making sure they have a say in decisions about treatment and planning of services.

Department of Health minister Lord Earl Howe, who represents England’s involvement in the strategy, says: “For the first time, we are strengthening the links between research and the treatment and care of patients with rare diseases. This is about putting those patients first, with better diagnosis, treatment and support for them and their families.”

In total the strategy outlines 51 commitments that should see each nation take action to develop plans that best meet their own healthcare system.

This all forms part of NHS England’s five-year scheme for specialised services which provides a “clear focus on a range of rare conditions and low volume treatments ranging from medical genetics and kidney disorders, to burn care”.

The government hopes commitment to diagnosis and early intervention of rare diseases will be boosted by improving education and awareness across all healthcare professions. Included in the policy are goals to involve patients in the development of training programmes, plus encouragement for industry professionals to get hands-on experience in specialist clinics.

The UK Rare Diseases Stakeholder Forum – established to help develop the strategy – will monitor the implementation of the plans across the UK. The Forum and NHS England’s Rare Diseases Advisory Group will provide opportunities to ensure collaboration between all four countries.

There are over 6,000 recognised orphan illnesses which affect one in 17 people at some point in their life. In the UK this amounts to around 3.5 million people and according to Rare Disease UK, 75% of orphan illnesses affect children.

The strategy will look to empower those affected by rare disease, promote the role of research and improve the ability to identify and prevent these types of illnesses.

The next step outlined in the plan will be to seize the opportunity presented by genomic testing to help transform the care of patients with uncommon conditions.

Tom Robinson

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