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All-Ireland Children and Young Adults Research Advisory Group for Rare Diseases (RAIN CRAG) launched

Today, Rare Diseases Day 2024, is the official launch of the All-Ireland Children and Young Adults Research Advisory Group for Rare Diseases (RAIN CRAG), the first of its kind on the Island of Ireland.

Spearheaded by the All-Island interdisciplinary rare disease research network (RAiN), this groundbreaking initiative addresses the unique needs of children and young people affected by rare diseases.

By actively engaging with children and young people aged 6-17 years, the initiative will ensure that their voices are heard and valued at every stage, helping to facilitate collaborative research and advocacy and drive positive change in the rare disease landscape, to ultimately improve outcomes for affected individuals and their families.

Professor Amy Jayne McKnight, Co-lead of the RAIN initiative from Queen's University Belfast, said: “The establishment of the RAIN CRAG is a testament to the collaborative spirit of RAiN. This groundbreaking All-Ireland initiative brings together young people, advocates, and rare disease experts to drive forward research, raise awareness, and improve outcomes empowering children and young people living with rare diseases to influence positive change.”

Rare diseases present a formidable global health challenge, affecting over 300 million individuals worldwide. With approximately 7,000 identified conditions, Rare Diseases significantly impact global communities, including 410,000 individuals on the Island of Ireland.

1 in 17 people will experience living with a rare disease at some point in their lives, and about 70% of Rare Diseases afflict children, young people, and their families, with a significant portion being chronic conditions. 35% of these conditions are life-limiting or life-threatening, often leading to premature death.

Many rare diseases cause intellectual and physical disabilities, placing substantial demands on caregivers and necessitating multidisciplinary input and regular hospitalisations.

Living with a rare disease is an ongoing learning journey for patients and families, often accompanied by adverse impacts. A shortage of specialist expertise necessitates patients and families becoming experts in their conditions. Challenges in accessing essential services for daily needs, including self-management, health service transition, educational/vocational support and integrated care, further exacerbate the situation.

Officially launching the RAiN CRAG, the Ombudsman for Children, Dr Niall Muldoon, said: “It is really important to bring children and young people to the table on this with the launch of the Children and Young Adults Research Advisory Group. For us in the Ombudsman for Children’s Office, listening to children and young people and ensuring their voices are heard on issues that impact them is fundamental to the work we do. It is really great to see the RAIN Network look to incorporate the lived views and experiences into their work through this Children and Young Adults Research Advisory Group.”

Lucy Gallagher, a RAiN CRAG member aged 11, said: “The RAiN CRAG gives me an exciting opportunity to tell everyone about my experience with rare disease; at times, it can feel like I’m the only person living with a rare disease. CRAG has shown me that there are so many young people living with rare diseases. We love having our voices and ideas heard. As a CRAG member, I am proud to be an ambassador for rare diseases as I want to raise awareness. Together we don’t feel rare.”

Associate Professor Suja Somanadhan, Co-lead of the RAIN initiative at University College Dublin, said: "Despite facing numerous challenges of living with rare diseases, children and young people exhibit remarkable resilience. The RAIN CRAG inclusive platform amplifies their voices, highlighting their diverse needs and the support required. Empowering them with knowledge and advocacy skills sparks a transformative journey towards enhanced peer-to-peer support, self-management, and resilience.

"We look to dismantle barriers and amplify their voices through training and mentoring. This collaborative effort fosters greater understanding and support within communities and institutions alike, generating innovative approaches with unwavering determination, making them powerful advocates for driving change and paving the way for an inclusive future for all impacted by rare diseases."

In addition to the CRAG, RAiN has launched 'Cup O’ Collaboration,' fostering collaboration and amplifying the voices of those living with rare diseases and parents/caregivers of those with a rare disease. Also, the RAiN hosts an early career researchers' platform, connecting our next generation of researchers and pioneers in rare disease research.

Outputs from the research network will be disseminated through open-access publications, regular presentations, and the network's website in easily accessible formats. RAiN will also host interdisciplinary networking events, bringing together researchers, practitioners, policymakers, patients, and families across the Island of Ireland.

Photo: AJ McKnight
AJ McKnight
AJ McKnight, Centre for Public Health
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Please do contact our rare disease team by email for further information.