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Rare Diseases Strategy

Dáil Éireann Debate, Tuesday - 15 September 2020

Tuesday, 15 September 2020

Questions (773)

Pádraig O'Sullivan

Question:

773. Deputy Pádraig O'Sullivan asked the Minister for Health when the rare diseases technology review committee, RDTRC, is scheduled to meet in 2020; the frequency with which he expects the committee to meet in 2021; and if he will make a statement on the matter. [23895/20]

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Written answers

A Technology Review Committee for Rare Diseases (as recommended by the National Rare Disease Plan for Ireland) was appointed in late 2018 with responsibility for:

- Reviewing proposals received from industry or expert groups in Ireland for funding of new products for rare diseases, or expanded indications for existing products for rare diseases and making recommendations as to the implementation of the relevant recommendations from the National Rare Diseases Plan 2011-2018; and

- Providing contributions to the development of clinical guidelines for relevant Orphan Medicinal Products (OMPs) and supporting the implementation of guidelines in conjunction with the National Drugs Management Programme Office where applicable.

The Rare Diseases Medicinal Products / Technology Review Committee meets in response to requests for assessment of new products for rare diseases or expanded indications for existing products for rare diseases. In 2020 no requests were received by the Committee until August when a request was received from the HSE Drugs Group to advise on two medicines.

The HSE has confirmed that the Committee will meet in the week commencing 21 September 2020 to provide the requested patient and clinician engagement that will facilitate the Drugs Group’s work. The frequency of subsequent meetings will relate directly to the number of requests received.

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