Naughten seeks an update on the National Rare Disease Plan

By Emmett Corcoran

By way of a written parliamentary question which was answered on November 28, 2023, Roscommon-Galway TD, Denis Naughten, posed an important question regarding the progress of the National Rare Disease Plan for the period post-2018.

His enquiry to the Health Minister was to the point: ‘To ask the Minister for Health the current status on (sic) the draft National Rare Disease Plan for the period post-2018; when this plan will be published; the reason for the delay in publishing the plan…’

According to the then Health Minister, James Reilly, the 2014-2018 Rare Disease Plan addressed: “…all rare diseases, which can number up to 8,000 diseases affecting millions of EU citizens. The challenges faced by people with rare diseases cannot be overstated”.

Additionally, the then Minister stated: “This policy framework envisages a combined approach with our EU partners and Northern Ireland to diagnose and treat people with rare diseases. We must deepen links with facilities and institutions in other countries where specialist services are available that may be absent in Ireland”.

In response to Deputy Naughten’s recent question, current Health Minister Stephen Donnelly provided an update. He stated: “In February, on Rare Diseases Day, I announced a plan to develop a revised National Rare Disease Plan, in line with the commitment in the Programme for Government.

“Initial work for the new plan has commenced, and a Steering Group to progress the new plan will be convened in December. The development of a new plan will allow us to consider areas of the previous plan that need to be further progressed, while also looking to the future and the needs of those patients and families living with a rare disease diagnosis”.

Regarding the timeline for the plan’s publication, Minister Donnelly clarified: “Regarding the launch and publishing of the New National Rare Diseases Plan, while it is expected to be launched by Q3 2024, it will be dependent on the work of the Steering Group in the development of the plan”.

With the Steering Group set to convene at some point this month, it appears there is a structured approach towards revising and updating the plan, considering both past efforts and future needs of rare disease patients and their families. However, the emphasis on the Steering Group’s role indicates that the final publication timeline may still be flexible, dependent on the progress made in developing this comprehensive plan.