Arpita Chowdhury reports from the release of an awareness video on Rare Diseases, hosted by the Ombudsman for Children.
Nearly 36 million people in Europe live with a rare disease, yet awareness and understanding remain limited. In an effort to change that, an educational video aimed at raising awareness about rare diseases was launched on February 17th at the Office of the Ombudsman for Children in Dublin. The video, produced in collaboration with University College Dublin, Queen’s University Belfast, the All-Ireland Rare Disease Interdisciplinary Research Network (RAiN)-CRAG, and the Irish Research Council with support from the Government of Ireland, serves as an impactful educational tool designed to foster empathy and inclusivity for children who require extra care.
A unique feature of the project is its co-creation approach, with young students playing an active role in its conception, design, and production. The initiative underscores the importance of accessibility and community-driven advocacy in raising awareness about rare diseases.
Watch the video here.
Speaking at the event, Ombudsman for Children, Dr. Niall Muldoon, praised the courage and dedication of those involved in the film’s creation. He emphasized the importance of respect, courage, and joy in fostering a more inclusive society.
“You're showing phenomenal courage in working in this area because you're doing it through your own lens, but you're also doing it for other children who can't do it,” Dr. Muldoon remarked. “Courage is something that happens a little bit every day. As Nelson Mandela said, courage is not the absence of fear, but getting on with it despite the fear.”
Highlighting the role of accessibility in ensuring equal opportunities for all children, Dr. Muldoon noted that the Ombudsman’s office has been designed with inclusivity in mind. “Everything we've done is to try to make it as accessible as possible. And fun and joy come with that accessibility.”
Speaking on the occasion, Dr. Suja Somanadhan, Associate Dean for Global Engagement at UCD, who is at the helm of the project, appreciated the hard work of everyone involved and applauded the young talents. She emphasized the need for awareness and resource-based support to take this initiative forward.
The film serves as a crucial step in educating both children and adults about rare diseases and fostering sensitivity toward those living with such conditions. The event saw the participation of academics, parents, caregivers, and advocates, all committed to enhancing awareness and support for children with rare diseases.
Dr. Muldoon concluded by commending the collaborative effort behind the project, stating, “The fact that you co-created the video is a testament to children’s rights in action. It is fantastic to see young voices leading the way in co-creation and awareness-building.”
With this initiative, stakeholders hope to continue advocating for greater inclusivity and policy support for children with rare diseases in Ireland.