Press release
Minister for Health announces additional €5 million funding for rare diseases
From Department of Health
Published on
Last updated on
From Department of Health
Published on
Last updated on
The Minister for Health Stephen Donnelly has today announced an additional €5 million in recurring funding for rare diseases in 2025. This brings total funding for rare diseases to €6.5 million in 2025, rising to €8 million in 2026.
This significant investment will support a broad range of initiatives aimed at improving the lives of the estimated 300,000 people in Ireland living with a rare disease. This funding includes approximately €700,000 for the development of services and supports for epidermolysis bullosa patients, including additional nurse led community supports, care coordination and mental health supports.
With more than 8,000 rare diseases, the challenges faced by individuals or patient groups can be a lonely and isolating experience. The additional funding announced today recognises the fact that people diagnosed with rare diseases often require complex and highly specialised care, and it will facilitate improved services and provision of care as well as international collaboration.
It will also support the implementation of the new National Rare Disease Strategy which will be published in the coming months.
Minister Donnelly said:
“I have listened very carefully to the case for additional funding made by a number of advocacy groups for rare diseases, and I commend organisations like Debra Ireland and their courageous ambassador Emma Fogarty for shining a light on the challenges faced by patients in their everyday lives.
“I understand it can be a lonely and frustrating task to fight for increased resources for a disease that affects a tiny number of people. However, I believe that investment in robust initiatives can deliver collective support for all people living with rare diseases. One in 17 people in our population are living with a rare disease, and the additional funding I’m announcing today is an investment in their improved quality of life and in better health outcomes.”
Interim Chief Medical Officer Professor Mary Horgan said:
“This additional funding will ensure increased momentum in 2025 as work gets underway on the implementation of the new National Rare Disease Strategy.
“People living with rare diseases, their families and carers are to be commended for their ongoing efforts to highlight how unmet health needs are impacting on their lives. With this significant additional investment we can now deliver improved supports that will make a tangible impact to the 6% of the population living with rare diseases.”
CEO of Rare Diseases Ireland Vicky McGrath said:
“I welcome this strong commitment by Government to provide an additional €5 million in funding for rare diseases. This funding will make a significant difference to our ability to implement a new rare disease strategy for Ireland to drive much needed improvements in the diagnosis, treatment and care of people living with rare diseases in Ireland.”
Minister Donnelly previously announced funding under Budget 2025 that will provide resources to improve care coordination and to strengthen collaboration with international expertise through the European Reference Networks. These networks connect healthcare professionals around Europe with specific expertise in rare diseases, facilitating collaboration on diagnosis and treatment for patients.
The 2025 funding will also strengthen resources in the Health Service Executive’s National Rare Disease Office, in advance of the soon-to-be-published new National Rare Disease Strategy. Minister Donnelly has asked that his department engage with the HSE to ensure that this additional funding is used to deliver the greatest impact for people living with rare diseases and their carers in Ireland.
Minister for Health Stephen Donnelly is available for interviews on this announcement. Please submit all interview requests to press_office@health.gov.ie
Rare diseases are defined as having a prevalence of fewer than five cases for every 10,000 persons. Collectively these diseases affect around 6% or one in 17 of the population in Ireland.
The National Rare Disease Steering Group was established in December 2023 to deliver on the Programme for Government commitment to develop a new National Rare Disease Strategy for Ireland. It is expected that the strategy will be published in the coming months with implementation commencing in 2025.