The Northern Ireland Rare Disease Partnership, Queen's University Belfast, Ulster University, Rare Diseases Ireland, and the Departments of Health in Northern Ireland and the Republic of Ireland convened a noteworthy event to celebrate Rare Disease Day as an all-Ireland group.…
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…
Contact are thrilled to be announcing our second Rare Conditions conference this May in Antrim! Following the success of our first Rare Conditions event in January, which bought together professionals, practitioners and familes living with rare conditions, our follow-up event…
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…
The Northern Ireland Rare Disease Partnership is delighted to announce a special Mayoral reception in honour of Rare Disease Day 2024, taking place on the 27th of March at the Guildhall in Derry/Londonderry. This notable event will convene influential members…
We’re delighted to announce Rare Disease Day 2024 Annual North and South Conference Looking to the future for Rare Disease A conference to bring together people living with rare disease, advocates, care providers, policy makers and industry to learn…
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…
