The document below addresses the needs of children with rare diseases in education in Northern Ireland. It includes statistics, literature reviews, parent testimonies, and recommendations for teaching and support staff. The aim is to provide a comprehensive overview of the challenges faced by these children and suggest ways to improve their educational experience. If you would like to download or learn more on the collaborative work with Education Authority we are carrying out, please email info@nirdp.org.uk
Shining a Light: Amplifying Young Voices in Northern Ireland’s Rare Disease Community
Did you know that across Europe, around 36 million people live with a rare disease? Here on the island of Ireland, that figure touches the lives of nearly 400,000 individuals. Heartbreakingly, a significant 70% of rare diseases impact children, and for 30% of these young people, their journey is tragically short, with many not living beyond their fifth birthday.
Living with a rare disease presents immense daily hurdles, yet the strength and resilience shown by these children are truly inspiring. Recognizing the vital need to ensure their voices are heard, the Children & Young People’s Advisory Group (CRAG) of the All Ireland Rare Diseases Interdisciplinary Research Network (RAiN) has been instrumental in co-designing a powerful educational video. This video aims to foster a deeper understanding among young people in Northern Ireland and beyond about the lived experiences of children facing rare diseases.
We at the Northern Ireland Rare Disease Partnership (NIRDP) are glad to share this valuable resource through our website for parents and caregivers of children with rare diseases, as well as professionals working with children in a school setting.
Join RAiN and our dedicated young advocates as we work together to raise crucial awareness. Through their own voices, creativity, and personal stories, this video vividly highlights the realities of navigating life with a rare disease. It underscores the profound importance of extending kindness, fostering genuine inclusion, and cultivating a deeper understanding within our communities right here in Northern Ireland.
Together, we have the opportunity to learn, offer meaningful support, and make a tangible difference in the lives of these remarkable children. Because, as we firmly believe, every single voice truly matters.
