The Virtual Support Hub will be getting out and about across the country to say hello! Join us on: Carer Information Fair - Carers Week 2024 Monday June 10th 10.30am (Northern HSC Trust Carer Hub) Carers fair for unpaid family…
We at the Northern Ireland Rare Disease Partnership (NIRDP) are thrilled to introduce our newly devised education and upskilling programme, "Understanding Rare". This initiative is designed to foster a deeper understanding and empathy towards the unique needs of the 1…
Exciting news the first ever Ulster University Rare Disease Society Event, took place on December 4th 2023. We would like to extend our gratitude to the outstanding members of the UU Rare Disease Society and Sandra Campbell Lecturer and Rare…
By Niall McCrackenBBC News NI People with rare diseases in Northern Ireland have been sharing their stories through a series of short films. There are more than 7,000 known rare conditions worldwide. It is estimated that more than 110,000 people,…
The condition is more unusual as it is geographically specific; all those diagnosed have familial connection to NW Donegal Derry woman, Rosaline Callaghan, was diagnosed in 2019, with the rare condition known as hereditary amyloidosis. It is a condition…
A ‘Biggest Loser’ Campaign which was held in Carnlough, in memory of young Maggie who tragically passed away in December 2021 from an undiagnosed rare condition – Addison’s Disease - has raised over £14,000 for Rare Disease Charities. The Biggest…
The Northern Ireland Rare Disease Partnership (NIRDP) charity recently celebrated its 10th anniversary in the Bishop’s Gate Hotel in Derry. The celebration event, organised by Sandra Campbell and the North West Rare Disease Support Group, was a hopeful and positive…
We're delighted to announce on NIRDP's 10th anniversary that an All-Party Group (APG) for Rare Disease has been established at the NI Assembly. This is all down to you, the NI Rare Disease Community who gave your support to the…
