Pádraig O'Sullivan (Cork North Central, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

607. To ask the Minister for Health if he will outline the main stakeholders from his Department and its agencies who will be involved in formulating a new national rare disease plan; if he will outline the anticipated work schedule, including an expected publication date for this new plan; and if he will make a statement on the matter. [11162/23]

Stephen Donnelly (Wicklow, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

The Government and I are fully committed to doing everything possible to assist people living with a rare disease.

I intend to bring forward a successor plan to the National Rare Disease Plan 2014-2018. However, there is no doubt that the Covid-19 pandemic slowed our progress up until now.

Nonetheless, various actions have been implemented and significant resources invested in this area in recent years.

Principal among those actions was the establishment of the HSE National Clinical Programme for Rare Diseases and a National Rare Disease Office.

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.

As a result of this collaboration, we have entered in 18 European Reference Networks (ERNs) on Rare Diseases. These ERNs include representation from five academic hospitals and three universities and is coordinated by the National Rare Disease Office. This represents a significant achievement by the health service, to drive innovation, training and clinical research for highly specialised care. Through the European Reference Networks, the National Rare Disease Office is leading out on the development of optimal care pathways across a range of rare diseases.

My Department is seeking to appoint, through the usual recruitment channels, an official to progress the commitment in the Programme for Government to bring forward a new National Rare Diseases Plan.

In terms of medicines for rare diseases, I have during my term of office significantly increased the level of funding available for new innovative medicines including medicines for rare diseases; a combined €100 million in the last three Budgets. Over one hundred new medicines have been approved including thirty-four for orphan medicines that are used to treat rare diseases. However, I accept that a new Plan is needed.