Category Archives: Rare Disease Implementation Plan

Communication and Information Review: Have your say, and make the NI Rare Disease Plan work!

Northern Ireland Rare Diseases Implementation Plan As part of the Plan we are working with the Department of Health and the HSC bodies to carry out a Communications and Information Review; and on the basis of the evidence gathered, to make … Continue reading

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Good News on access to drugs for rare conditions: Thank you, Minister!

Health Minister Michelle O’Neill today announced that eligible patients in the north of Ireland will receive innovative new drugs for the treatment of very rare conditions. The Minister has confirmed that drugs evaluated under the Highly Specialised Technology Programme of … Continue reading

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Rare Disease Day 2016 Patient Voice and Empowerment

Rare Disease Day 29 February is getting close!  Here are the full programmes for the Conference in Riddel Hall, and for the Reception in the Long Gallery at Stormont; follow the links in the post below to register NOW The … Continue reading

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Great News! NI’s RD Implementation Plan and Genomic Medicine Centre Announced

Minister Simon Hamilton today  announced a £3.3m investment into the creation of an innovative Northern Ireland Genomics Medicine Centre (NIGMC); and formally launched the Northern Ireland Rare Disease Implementation Plan: wonderful news for patients, carers, and clinicians living and working with rare … Continue reading

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