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…
During lockdown, George and Saul took part in a project that encouraged young people who were shielding to film their lockdown experience. Through the group Headliners they produced a short film that was funded by the National Lottery Community Fund.…
