Author Archives: Fiona

next steps- staff!

We are delighted that we have been awarded funding by the National Lottery through the Big Lottery Fund, for a 2 year pilot project. The Stronger Together project will work to build capacity within and across the rare disease sector … Continue reading

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You couldn’t make it up…

Many of us have had those moments. The moments when we’ve been baffled/ bewildered/ outraged by our dealings with healthcare professionals: e.g. A&E telling you your case is too complicated and to talk to your GP e.g. your GP telling … Continue reading

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Access to Specialist Drugs – Share your Opinion!

NIRDP are glad to share information about a series of DHSSPS consultation events. Access to specialist drugs is vital. What do you think of the recommendations below? Can you attend a meeting and get your voice heard?   Announcement of … 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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In early October, a small team from NIRDP presented to the Human Rights inquiry into emergency care. Our presentation can be seen on this link Thanks to all for letting us share your experiences and words of wisdom.

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