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 from the Northern Ireland Rare Disease Partnership (NIRDP), including Sandra Campbell Volunteer/Coordinator Foyle Rare Disease Forum, Rosaline Callaghan Development officer and Caroline McFerran Community Navigator, as well as rare disease patients, carers, and service-users from the Northwest of Northern Ireland. Such as Oran and Mum Brenda who kindly shared there rare story – A journey with Porphyria – A rare genetic disorder meaning that Oran can not go out in natural light’
The reception is pivotal in elevating the conversation and action around the needs of the approximately 110,000 individuals in Northern Ireland who are living with a rare disease. It underscores the importance of community, healthcare providers, and policymakers coming together to support and advocate for those facing the challenges of a rare disease.
This year’s event is also marked by the recognition of the newly formed Rare Disease student society at the University of Ulster, in Derry/Londonderry Campus, the first of its kind in a Medical School in the UK or Ireland. This initiative illustrates the growing awareness and involvement of younger generations in the rare disease community. Additionally, the reception will highlight the efforts of local MLA Mark Durkan, who chairs the Northern Ireland Rare Disease All-Party Group, further emphasizing the critical role of political leadership in advancing the cause of rare disease patients.
Patrick Toland, CEO of the Northern Ireland Rare Disease Partnership, commented on the upcoming reception, saying, @This event at the Guildhall is a powerful statement of unity and hope for the rare disease community in Northern Ireland. It exemplifies our collective commitment to shining a light on the challenges and triumphs of those living with rare diseases. Together, we are making strides towards a future of greater understanding and support.'”
The event promises to be a significant milestone in fostering greater understanding, support, and advocacy for rare disease patients and their families in Northern Ireland and beyond. Through collective efforts, awareness, and determination, we can achieve meaningful improvements in the lives of those affected by rare diseases.
About the Northern Ireland Rare Disease Partnership (NIRDP): The NIRDP plays an essential role in advocating for and supporting individuals and families affected by rare diseases across Northern Ireland. By working collaboratively with healthcare professionals, researchers, and policymakers, the NIRDP strives to enhance care and quality of life for those living with rare diseases.
For more information, support or images of the event, please contact info@nirdp.org.uk