‘Cross border approach key to tackling Rare Diseases

THE SDLP’S Mark H Durkan has called for a collaborative approach to Rare Diseases in order to improve the lives of over 110,000 people of the North living with rare conditions.

Ahead of Rare Disease Day this Sunday, February 29, Mr Durkan attended the first UK-wide Rare Disease Event as a guest speaker alongside the Health Minister in conjunction with the Northern Ireland Rare Disease Partnership and Genetics Alliance.

Speaking at the event, the Foyle MLA commented: “The opportunity to speak at the Rare Diseases Event was somewhat daunting but I’m not the only one whose knowledge is limited on Rare Diseases.

“In fact, it is that lack of knowledge even among medical professionals- with over 7000 rare conditions identified that is perhaps understandable, but when a lack of specialists in contributing to delayed diagnosis and access to support then that is unacceptable.

“As a public representative, I have over the years helped or tried my best to help several constituents with rare condition wade through the difficulties accessing the help they need.

“The length of our waiting lists is awful and well documented but many living with rare conditions, will be familiar with the scenario where you are on multiple lists, to see multiples, doctors all in connections with the same conditions.

“There are of course wider knock-on impacts; we need to do more to create awareness and understanding of rare conditions access for employers, assessors as well as families and carers.

“The Rare Disease Implementation Plan, is a solid piece of work but now we really must start looking at its implementation to deliver real, tangible improvements and benefits to people.

“The Partnership has forged a good working relationship with Rare Disease Ireland.

“This collaboration has led to an All-Ireland research network with universities North and South working closely together.

“It makes complete sense on an island of this size, when commissioning of services is based on critical mass, that we look at the 400, 000 people on the island rather than just the 110,000 here.

“Rare Disease does not recognise borders and neither should our attempts to help those with Rare Disease. Ní neart go cur le chéile – we are stronger working together.

“We must also provide shelter for those who for so long have had no home within the health service by must looking at the appointment of Rare Disease consultants.

“I look forward to whatever role I can play in improving the experience of patients now and in the future,” added Mr Durkan.

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