Category Archives: Updates

An Honour

We are delighted to share the news that our volunteer Christine Collins, has received the honorary award of MBE from Her Majesty The Queen today for her outstanding services to people with rare diseases. Christine, a retired civil servant, is … Continue reading

Posted in Updates | Tagged , , | Leave a comment

Stronger Together Project starts work!

  Sandra Campbell, Tanya Boggs, and Fiona McLaughlin: Getting the Stronger Together Project off to a great start in Derry!  Today marks a great step forward for NIRDP and for all those affected by rare diseases in Northern Ireland, as … Continue reading

Posted in Events, Rare Disease Implementation Plan, Updates | Tagged , , , | Leave a comment

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

Posted in Uncategorized, Updates | Tagged , , , | Leave a comment

Who knows what in rare disease? Engagement, information and communication

As part of the work on the NI Rare Disease Plan, NIRDP has been running a series of Workshops across Northern Ireland, and an Online Survey, to identify information needs in relation to rare disease issues; what information is currently … Continue reading

Posted in Events, Rare Disease Implementation Plan, Updates | Tagged , , , , , , , | 1 Comment

NORTHERN IRELAND RARE DISEASES IMPLEMENTATION PLAN – FOCUS WORKSHOP FOR HEALTHCARE PROFESSIONALS

This is to provide more information on the Focus Workshop, aimed primarily at Healthcare professionals, which is being held from 4pm to 7pm on 7 June, in the Grosvenor Hall, Glengall Street, Belfast BT15 5AD. The Focus Workshop builds on … Continue reading

Posted in Consultations, Events, Rare Disease Implementation Plan, Updates | Leave a comment