Tag Archives: UK Plan for Rare Disease Consultation

What do you want the UK rare disease plan to include?

Those of us who live or work with rare disease in NI have an important opportunity just now. It’s the chance to make our voices heard- to get politicians and policy makers to hear what’s important to us, what will … Continue reading

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UK Rare Disease Plan consultation and webinar

At the NIRDP launch on 29th February, Rare Disease Day, Edwin Poots, the NI Minister for Health, Social Services and Public Safety, launched a public consultation on a UK plan for rare diseases. (See the consultation document here). This is a joint … Continue reading

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Lift off!

NIRDP was formally launched on Rare Disease day with much support from patients, families, health professionals and politicians. We were delighted that the NI Minister for Health, Social Services and Public Safety was able to participate in the event- cutting cake, … Continue reading

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