The HSE Technical Review Committee for Rare Diseases is the national committee, established by the HSE in 2018, to make recommendations on clinical issues around the reimbursement of a medicine. The aim of the Committee is to ensure that the perspective of patients and clinicians inform the final recommendation on pricing and reimbursement made by the HSE Drugs Group to the HSE Senior Management. The Committee meets at the request of the HSE Drugs Group. 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 Technical Review Committee for Rare Diseases comprises of 13 members, including two patient representatives. Other members include the chair, the clinical lead for the HSE Rare Disease Programme, five consultants with rare disease expertise, two pharmacits, one health technology assessor and one representative from the Health Information and Quality Authority (HIQA). The patient representatives were appointed by patient umbrella organisations with an interest in rare diseases following an election process.