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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When NIRDP met NIHRC

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 http://www.nihrc.org/inquiry/public-hearings/public-hearing-day-11-belfast Thanks to all for letting us share your experiences and words of wisdom.

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