Funding must be ringfenced to support people with rare diseases in Mayo

Sustainable funding must be ringfenced to ensure the new National Rare Disease Strategy will be implemented to support people with rare diseases in Mayo.

That’s according to Rare Diseases Ireland, who were marking the annual 'Rare Disease Day' last week (February 29) with a conference attended by Minister for Health, Stephen Donnelly.

Rare Disease Day takes place annually on the last day in February. There are approximately 300,000 people living with a rare disease in Ireland, of which there are more than 6,000 types.

This year’s conference, 'Looking to the Future for Rare Diseases', heard from medical experts and patient representatives as to what is needed to ensure people with rare diseases are prioritised as the country transitions to health regions under the Sláintecare model.

Minister Donnelly also addressed the event, which took place in Dublin and was attended by people living with rare diseases and their families, care providers, policy makers and medical industry representatives.

A new National Rare Disease Strategy for Ireland is currently being developed and is expected to be completed over the coming months.

Speaking at the conference, Vicky McGrath, CEO of Rare Diseases Ireland, highlighted how the strategy will need to be adequately funded if it is to have a positive impact on people in Mayo living with rare diseases.

She stated: “People in Mayo living with rare diseases experience delays with diagnosis, limited and disjointed access to specialist expertise and treatments, and inadequate care in the community. Around one in three patients wait up to five years for a diagnosis. That results in five years of incorrectly managed treatment for patients.

“We are pleased with the progress with the development of the new National Rare Disease Strategy for Ireland. The patient is at the heart of the work of the strategy steering group.

“However, the strategy will only have an impact on the lived experience of the rare disease community if implementation is properly resourced and funded, places the rare disease community at its centre, and if its implementation is prioritised as rare diseases must be elevated as a public health priority in the Sláintecare rollout.

“For too long the care and treatment of people living with rare diseases in Mayo and throughout the country has been under-resourced. We have an opportunity now to put in place proper integrated care where it is most needed – in local communities.”

The voices and lived experience of people living with rare diseases and their families are central to the development of the strategy. Rare Disease Ireland are encouraging people living with rare diseases and their families to become involved in the recently established Rare Disease Patient Forum, which will input directly to the steering group responsible for the delivery of the strategy and associated implementation plan.

For further information on Rare Diseases Ireland, visit www.rdi.ie.