MUNSTER Technological University (MTU) hosted the All-Ireland Rare Disease Interdisciplinary Research Network (RAiN) symposium on June 10 at its Kerry campus.
This symposium was open to anyone living with or interested in rare diseases. Rare diseases, though individually rare, collectively present a formidable challenge to the global population, impacting approximately 350 million people worldwide.
The symposium brought together approximately 50 attendees, including researchers, health and social care professionals, academics, policymakers, and advocates in the rare disease field.
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It showcased the power of collective action in promoting equality, diversity, and inclusion for rare diseases.
The symposium was opened by Associate Professor Suja Somanadhan (UCD), and Professor Maggie Cusack (President of MTU) welcomed everyone to the symposium and highlighted the challenges faced by those living with a rare disease across Ireland and the role of RAiN.
Bernadette Sheehan Gilroy from the Dept of Health and Leisure Studies (MTU) spoke about low-protein dietary therapy in the context of inborn errors of metabolism expressing concerns including the lack of research to support the recent implementation of the ‘hot school meals programme’ for those adhering to lifelong low-protein dietary therapy.
As part of Bernadette’s presentation, attendees heard from a young man living with tyrosinemia, from the parent of a child with homocystinuria and the perspective of the Irish PKU (Phenylketonuria) community through research Bernadette conducted in collaboration with Associate Professor Somanadhan in the RAiN network.
Thereafter, the work of RAiN’s Children’s Research Advisory Group (CRAG) was presented by two members of the CRAG – Ethan Gilroy and Aaryan Mahesh.
The two young members emphasised the importance of amplifying the voices of young people in rare disease research. CRAG member Lucy Gallagher shared a powerful message, virtually, reminding other young people living with rare diseases to “Be the voice, not the Echo”.
After lunch, the symposium heard from Ian Fallon, who presented on the work of BUMBLEance, the first non-governmental funded child ambulance service in Ireland. Catherine Carty (UNESCO Chair MTU) spoke about rare diseases in relation to Principle Two of the United Nations Sustainable Developmental Goals Declaration to “Leaving No One Behind”.
Rosie Dempsey (MTU) described the process of designing a cartoon video which raises awareness of haemophilia.
The day concluded with a panel conversation led by Associate Professor Somanadhan. The panelists included Anne Lawlor (22q11), Mary Vasseghi (TSC Ireland), Cassandra Dinius and Daniel Mikula (Rare Disease Clinical Trial Network), and Triona Seery (Patient Advocate).
The day was an immense success, and RAiN and MTU would like to thank all who attended, participated or supported the day. For more information on RAiN, see the network’s website – https://www.rainrareresearch.org/
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