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NHS England today welcomes the publication by the Department of Health of the UK Strategy for Rare Diseases.
NHS England is now working with Rare Disease UK and the Specialised Healthcare Alliance to develop the Mission and Vision of the strategy for England.
Input from stakeholders will be invited at scoping and engagement events throughout the next three months, and all stakeholders (including patient groups, industry, clinicians and commissioners) will be invited to submit proposals for local changes. These will be scored and prioritised based on value to patients, cost/saving to deliver and ease of achievability.
Patients, clinicians and members of the public will then be asked for their views on the top priorities, before NHS England sets out its plan. NHS England will publish its strategy for specialised services, which focus on rare diseases, in July 2014.
Dr Mike Bewick, Deputy Medical Director at NHS England, said: “The unique structure of NHS England means that we can take a much more strategic national view of how specialised services, especially those for people with very rare diseases, can be organised to make sure everyone who needs them has access to the very best services and treatments.
“We will look at the strategy in more detail, and work with patients, clinicians and the public to put clear, coherent plans in place to make this strategy a reality. It is vital that we ensure people with very rare conditions, who are often children, get the right treatment at the right time, and that all parts of the NHS work together to achieve this.”