Rare Disease Plan

The Minister for Health Stephen Donnelly has marked Rare Disease Day by announcing that his department is to develop a new National Rare Disease Plan.

Pledging support to people living with rare diseases the Minister confirmed that work is due to commence on the new National Rare Disease Plan, in line with the commitment in the Programme for Government.

Improving and expanding the care and treatment of patients with rare diseases is a priority for the government, with work spearheaded by the HSE National Clinical Programme for Rare Diseases.

The government has also substantially increased funding for new innovative medicines for rare diseases, investing ¤100 million over the last three Budgets.

During this time, more than 100 new medicines have been approved, including 34 orphan medicines to treat rare diseases.

In 2023, the government has committed ¤2.7 million to support the implementation of this Strategy.

Minister Donnelly said, “I understand that patients living with rare diseases and their families face huge challenges in managing and treating their conditions, and these challenges are heightened by the lack of information and research into these diseases.

“As a health service, we are working to change this. Personalised treatments will help transform healthcare provision in Ireland, and this vision has already been laid out with the recent launch of the National Strategy for Accelerating Genetic and Genomic Medicine in Ireland.”

Last year the HSE was nominated as the National Competent Authority in an EU Joint Action of European Reference Networks for Rare Diseases, which enables greater coordination and sharing of best practices in key areas such as genetic testing.

Highlighting the importance of this EU-wide approach, the Chief Medical Officer Professor Breda Smyth said:

“This collaboration has allowed us to enter into 18 European Reference Networks (ERNs) on Rare Diseases.”