Tag Archives: #strongertogether

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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Let’s talk about the plan

NIRDP are pleased to announce that we will be coordinating a series of open meetings across the region for consideration of the draft NI Rare Disease implementation plan. The meetings are open to all, and are being held in association … Continue reading

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Twitter chat on #raredisease

On 5 November the regular #irishmed twitter chat (Wed, 10pm) hosted a discussion on rare disease. The regular host is @drlfarrell, a GP and writer, and he asked our own @speccymcspec to co-host. Questions included: how common are rare diseases?; … Continue reading

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