Northern Ireland brings secure funding for rare disease drugs a step closer

Published Date
Peter Sutton
Campaigners lobbying in the Northern Ireland Assembly at Stormont

Thanks to pressure from the Muscular Dystrophy Campaign’s Fast Forward initiative, Northern Ireland has moved a step closer to establishing secure funding for rare disease drugs.

The Health Minister, Jim Wells MLA, has announced that the Northern Ireland Government is going to consult on whether it should introduce a ring fenced fund for rare diseases.

The Government is also going to consult on whether to make it easier for people to access drugs through what is known as an ‘Individual Funding Request’.

This is when a doctor requests a drug for one or a very small number of patients, if the doctor believes they would benefit more from that drug than the vast majority of other people with the same condition.

The Muscular Dystrophy Campaign will be having our say at the forthcoming consultation.

What is a ring fenced fund and why is it important for muscle-wasting conditions?

Drugs for rare diseases such as muscular dystrophy are likely to be more expensive per person, compared to drugs for more common conditions.

Without money set aside to pay for these treatments (known as a ‘ring fenced fund’) there are fears that it will be more likely that they will be rejected because they are expensive.

Fast Forward

Our Fast Forward campaign with families has been instrumental in pressing for a ring fenced fund for rare disease drugs.

We are very pleased that Northern Ireland has now moved a step closer to introducing one.

For more information on this announcement, please contact Peter Sutton on or call 020 7803 4838

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