Funding for implementation of new National Rare Disease Strategy must be ringfenced to support people with rare diseases in Kildare — Rare Diseases Ireland

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

That’s according to Rare Diseases Ireland, who were marking the annual 'Rare Disease Day' last week on Thursday, February 29 last 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 we transition 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.

Pictured at the conference marking Rare Disease Day in Farmleigh House, Phoenix Park is CEO of Rare Diseases Ireland Vicky McGrath, Alan Finglas(father to Dylan Finglas who is living with a rare metabolic condition) and Gillian Stafford, who is living with two separate rare diseases.
Photo: Barry Cronin / www.barrycronin.com.

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 Kildare living with rare diseases.

Ms McGrath said: "People in Kildare 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."

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She continued: "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 roll out.

"For too long the care and treatment of people living with rare diseases in Kildare 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," she concluded.

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.

Professor Cecily Kelleher, Chair of the National Rare Disease Strategy Steering Group, highlighted the importance of taking account of the whole lived experience and how factors outside traditional health settings such as housing, education and transport impact on the health and welfare of individuals.

Avril Daly, President of EURODIS – Rare Diseases Europe, spoke to the need for Ireland to align with international best practice when supporting people living with rare diseases.

Ms Emer Cooke, Executive Director of the European Medicines Agency, discussed how there is an expected increase in the rate of advanced medicines approval over the coming years that will have the potential to transform the lives of people with rare diseases and their families.

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