Michael Creed
Question:880. Deputy Michael Creed asked the Minister for Health the status of the commitment in the programme for Government to update the national rare diseases plan. [11632/21]
View answerWednesday, 3 March 2021
Questions (880)
Written answers
A National Rare Disease Plan for Ireland (2014 – 2018) was launched by the Minister for Health in July 2014. This is a generic policy framework for rare diseases. The scope of the plan is broad given that there are approximately 8,000 rare diseases affecting millions of EU citizens; and consequently, there can be a dearth of expertise and knowledge about some rare diseases, simply because they are so rare.
Many of the major recommendations of the plan have already been implemented including the establishment of a National Clinical Programme for Rare Diseases and a Rare Disease Office. Building on this progress to date, themes for inclusion in a roadmap for the coming period have been agreed with the Rare Disease Task Force, which comprises the main rare disease advocacy groups; Rare Disease Ireland, the Medical Research Charities Group (MRCP), and the Irish Platform for Patient Organisations, Science and Industry (IPPPOSI). The Rare Disease Plan is now firmly embedded in the work of the Rare Disease Office which is under the governance of the HSE, Office of the Chief Clinical Officer. This means that, from 01 September 2020, the NRDO became the main contact point and driver for national HSE rare disease projects and initiatives and the National Clinical Programme for Rare Diseases was wound down and any outstanding projects transferred to the NRDO.
Meetings, to ensure that the input and the voice of the patient is represented in the continuing work ongoing in relation to Rare Diseases take place at regular intervals with the Rare Disease Task Force, the HSE National Clinical Programme for Rare Diseases and the Rare Disease Office.
A number of key themes have now been identified for progression in the coming period, including: Patient Awareness; European Reference Networks; Research & Registries; Access to Services; Access to Medicines; Diagnosis; Education & Training and Legislation & Policy. This will form the basis for work in this area in the time ahead.