Denis Naughten
Question:613. Deputy Denis Naughten asked the Minister for Health his plans to fund the 18 European rare disease reference networks that involve Irish clinicians; and if he will make a statement on the matter. [52178/23]
View answerTuesday, 28 November 2023
Questions (613)
Written answers
Following the announcement of the budget allocation for my Department, I will shortly be issuing a Letter of Determination to the HSE outlining my priorities and funding levels for 2024. This will be the basis on which the HSE will draw up its National Service Plan (NSP) for 2024. It is not until the conclusion of this process that a detailed breakdown of new development expenditure will be available.
My Department has completed an update of the 48 recommendations from the National Rare Disease Plan 2014-2018. In parallel to this, work has commenced on the development of a new Rare Disease Plan and is progressing with due consideration being given to how it can best meet the needs of patients and families affected by a rare disease. A Steering Group has been established and will be convened in December to drive the development of a successor to the National Rare Disease Plan 2014-2018.
My Department has also recently secured co-funding for Ireland’s involvement in the EU Joint Action on Rare Diseases (JARDIN). The Joint Action aims to support European Reference Networks (ERNs) integration to the national healthcare systems of Member States by providing direct grants to Member States’ authorities.
The expected results of this Joint Action are exchange of best practice and concrete proposals, guidelines, models, and recommendations for better integration of ERNs into national healthcare systems, including well-defined patient pathways, referral procedures, development of national networks on rare diseases, and guidelines for development of national teleconsultation tools.