Bernard Durkan
Question:231. Deputy Bernard J. Durkan asked the Minister for Health the extent to which a national rare disease strategy is evolving; and if he will make a statement on the matter. [6289/21]
View answerThursday, 4 February 2021
Questions (231)
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. In December 2013 the National Clinical Programme for Rare Diseases was established as a joint initiative between the HSE and the Royal College of Physicians of Ireland. The opening of the National Rare Disease Office, (NRDO) in 2015 was a significant milestone for people living with a rare disease, their families and their healthcare professionals. Prof Eileen Treacy is the Director of the National Rare Diseases Office, whose purpose it is to provide current and reliable information about genetic and rare diseases to patients, families and healthcare professionals.
On foot of the HSE Chief Clinical Officer’s (CCO), review of all the national clinical programmes in April 2019, it was recommended that the National Clinical Programme for Rare Diseases be operationalised and incorporated into the National Rare Disease Office. From 01 September 2020, the NRDO has become the main contact point and driver for national HSE rare disease projects and initiatives. In line with Slaintecare proposals and the National Model of Care for Rare Diseases 2020, The National Rare Disease Office have plans to implement integrated care pathways for all rare diseases. The work of the NRDO is being overseen and governed by HSE Acute Operations. This means that the National Clinical Programme for Rare Diseases is being wound down and any outstanding projects transferred to the NRDO.
Building on the significant progress to date, a number of 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). Those themes identified for future progress, include: Patient Awareness; European Reference Networks; Research & Registries; Access to Services; Access to Medicines; Diagnosis; Education & Training and Legislation & Policy.