Call for rare conditions drugs fund

2 September 2013 Last updated at 19:57 ET By Branwen Jeffreys Health correspondent, BBC News

A group of MPs is calling for a ring-fenced fund to pay for drugs for rare conditions.

The Parliamentary Group for Muscular Dystrophy says it is concerned about funding for high-cost drugs.

It comes after the special budget for treating rare diseases in England was merged into the overall NHS budget. Scotland has a fund in place for the so called "orphan drugs" until April 2014.

A UK-wide strategy for rare diseases will be published this year.

Overall it is estimated that 3.5 million people in the UK suffer from a rare disease, and that 70,000 of those have some form of the different muscle-wasting diseases known as muscular dystrophy.

We've got families setting great store by the treatments coming through. It would be heartbreaking and devastating if they're not available to children who need them

The MPs say they are concerned that funds previously ear-marked for drugs for rare diseases have now been merged into the budget for all specialised services in England.

Decisions on how to spend a 100m fund for rare diseases, sometimes called orphan conditions, were made on the advice of a special committee but that power was transferred to NHS England in April.

At the same time, the cost and clinical advisory body, the National Institute for Health and Care Excellence (NICE), took over responsibility for assessing these drugs as part of the wider reorganisation of the health service in England.

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Call for rare conditions drugs fund