Rare Disease Partnership celebrates 10th anniversary in Derry
The celebration event, organised by Sandra Campbell and the North West Rare Disease Support Group, was a hopeful and positive gathering of: rare disease patients and carers; the charity founding members; the NIRDP Charity Board; NIRDP staff team; members of the All-Party Group on Rare Disease – MLAs Mark H Durkan, Maolíosa McHugh and Ciara Ferguson; Rare Disease Academics; and Health Sector colleagues who gathered to hear about the history of NIRDP - something which had started out as a little umbrella organisation and has today become such an important source of help to the 1 in 17 people across Northern Ireland affected by a rare condition or disease.
Sandra Campbell, NIRDP volunteer and advisor, said: “We were delighted to welcome the NIRDP family to the North West to mark this special milestone. NIRDP is a charity which is an important partnership of a range of stakeholders from health, research, political, medical education and pharmaceutical organisations and a central hub for anyone with interest in rare conditions . NIRDP works tirelessly to support families throughout their rare disease experience.”
NIRDP Chair Sarah Callaghan said: “This lovely celebration gave us an opportunity to look back on the history of NIRDP, where the small charity had come from, and to look forward to the opportunities and future plans needed to support the rare disease community in Northern Ireland.
"None of us realised ten years ago how important the charity would become, and nor of the lasting friendships and opportunities that have grown in the rare disease community. A huge thanks to everyone who has been involved over the years.”
NIRDP works on a range of projects to advocate, connect, educate and innovate on behalf of the RD community. NIRDP provides a Rare Disease Virtual Support Hub (VSH) supporting those living with and those caring for people with often very challenging and complex medical needs. If you have any queries please contact the Rare Disease Virtual Support Hub on email [email protected] or telephone 0770 447 6929 or 0770 447 6930