Author Archives: danielle

Queens University “Patient Passport” Study 

The Northern Ireland Rare Disease Partnership are supporting a research study being run by Queens University called the “Patient Passport”.  This study is researching the benefits of a document that people who manage a rare condition can carry around with … Continue reading

Posted in Uncategorized | 4 Comments

ANNUAL VASCULITIS IRELAND AWARENESS ALL IRELAND CONFERENCE

Vasculitis Ireland Awareness are hosting their annual All Ireland conference on 28th and 29th of October in the Royal Marine Hotel, Dun Laoghaire. This year will open with a patient panel, where attendees will have the opportunity to hear more … Continue reading

Posted in Events | Leave a comment

Staff Vacancy: Project Officer (part time, home based)

We have recently been awarded funding by the National Lottery through the Big Lottery Fund for a 2 year pilot project, “Stronger Together”, which will work to build capacity within and across the rare disease sector and help to identify … Continue reading

Posted in Uncategorized | Leave a comment

NIRDP MOVING FORWARD AFTER A SUCCESSFUL RECRUITMENT PROGRAMME!

We were one of six delighted community groups across Northern Ireland celebrating a shared award of £1 million from The National Lottery this June, receiving a £112,124 share of this total fund to employ 2 part-time members of staff who … Continue reading

Posted in Uncategorized | Leave a comment