A special event aimed at “bringing people together” to better serve those living with rare diseases in Northern Ireland is to be held in Armagh.
The event is to be held on March 18 at Ardmore Recreation Centre with the intention of bringing anyone living with a rare disease, people who work with those living with a rare disease, local medical professional and councillors into the same room to contribute to the next Northern Ireland Rare Disease Action Plan.
Held by Northern Ireland Rare Disease Partnership (NIRDP), the event will address any “gaps in the community” and how there can be a difference made as well as identifying aspects of the current action plan that have worked successfully.
Speaking to Armagh I, NIRDP Volunteer, Rosemary Coade-Arbuthnot spoke of her own experience with rare disease.
“My husband died in 2010 from a rare condition known as Multiple System Atrophy (MSA) and there were no consultants, no nurse and just nothing really in Northern Ireland at the time,” she said.
“So after Michael died I was approached by another family and I asked the charity in London [MSA Trust] if they would send a nurse over and I would host her and set up support groups.
“I have done that with MSA since 2010, then there was a gap where we couldn’t get consultants on board and so we started to try and educate medical staff here into rare conditions and so a group of us formed the NIRDP in 2012.”
While rare, some conditions are well known, like Spina Bifida; others less so, like MSA, or 22q Deletion, or Wilson’s Disease.
The impact of a rare disease isn’t just on the physical health of a person, but on mental health, on education, and on their carers and families.
NIRDP want to ensure that “no one is left behind, because their condition is rare and needs resilience and connection”.
Rosemary adds: “Every day people sometimes think there is nothing wrong with a person but they may have a rare condition – it’s not always seen.
“One in 17 people have are living with a rare condition.”
The event is being held in partnership with Rare Disease Ireland, University College Dublin, Queen’s University Belfast, Ulster University, and the Department of Health.
Fiona McLaughlin, co-chair of NIRDP said: “We are delighted that working in partnership with families, clinicians, researchers and the Department of Health enables us to celebrate, to challenge, and to drive changes for those who live and work with rare disease.
“We need to share lived experience; what’s working well, what are the challenges, how do we work better together? We’re looking forward to catching up with old friends and sharing the experiences and wisdom of the wider community.”
Prof. Ian Young, Department of Health, added: “The Northern Ireland Rare Diseases Action Plan was published in 2022, setting out 14 key actions to improve the lives of people living with a rare condition and informed by the priorities of the rare disease community.
“Since then, the Northern Ireland Rare Diseases Implementation Group (NIRDIG) has been working hard with stakeholders and delivery partners to implement these actions, and we are very proud of the progress made to date.
“We welcome the opportunity to share this progress with you and to hear your views on how we can develop the Action Plan to better meet the needs of the rare diseases community in the future and deliver on the issues that matter to you.”
Booking is advised but walk-in attendance is also welcome.
For more information, or to book please email info@nirdp.org.uk.
