About RAiN
The All-Ireland Rare Disease Interdisciplinary Research Network (RAiN) brings together a broad range of interdisciplinary professionals and patient representatives with an interest in research.
It aims to enhance the knowledge sharing process to address the needs of people living with rare diseases, and aligns with ‘Principle 2: Leave No One Behind’ of the UN Sustainable Development Goals.
Partnering for Strength: Collaborating with Institutions, Services and Organisations as part of the All-Ireland Rare Disease Interdisciplinary Research Network (RAiN)
At RAiN, we recognise the power of collaboration and the strength that comes from partnering with institutions and organisations. As a network dedicated to advancing rare disease research, advocacy, and support, we understand that no single entity can tackle the complex challenges of rare diseases alone.
By forging partnerships with academic institutions, research centres, healthcare services, and governmental bodies, we create a robust network of expertise and resources. These partnerships enable us to address the diverse needs of individuals and families affected by rare diseases, as well as bridge gaps in knowledge and services.
Engaging with patient organisations is integral to our network's functioning. These partnerships provide us with invaluable insights into the lived experiences and unique challenges faced by individuals and families affected by rare diseases. Working alongside patient groups allows us to amplify our advocacy efforts and ensure the voices of rare disease communities are heard by policymakers, funders, and the wider society.
Aims of RAiN
-
CONNECT
To bring together interdisciplinary researchers, practitioners, and policymakers across the island of Ireland to form an interdisciplinary research network to improve awareness of and participation in rare disease research.
-
ADDRESS
To address an area of unmet need of children and young people living with rare diseases and their families with a comprehensive interdisciplinary and intersectoral approach that places patients and their needs at the centre.
-
BUILD
Build on established research partnerships such as RAINDROP (ROI) and RARDTAC (NI), while developing new interdisciplinary rare disease research networks to inspire and empower early career researchers as emerging leaders.
-
REACH
To build strategic transdisciplinary networks to advance health service developments, leverage funding, and facilitate internationally excellent translational research (US and Ireland).
Goals of RAiN
-
Be a strong cross-border hub of excellence for interdisciplinary rare disease research with local impact and global reach, supported by a shared island infrastructure (future) with a mutual respect.
-
Establish a comprehensive programme of collaborative, innovative research growing Ireland’s overall research skills and capacity.
-
To inspire and empower early career researchers as emerging leaders to promote world-class educational developments, advance health service developments, leverage funding initiatives, and facilitate internationally excellent translational research.
-
Support practical solutions for common strategic challenges affecting people living and working with rare diseases across Ireland, including enhanced screening, earlier diagnosis and predictive analytics, interventions to reduce the burden of rare diseases.
-
Co-design innovative, patient-centred interventions aimed at assessing patient-reported outcomes and experiences, and providing support for day-to-day life of people living with rare diseases.
Partnering with institutions and organisations is a cornerstone of our work at RAiN.
At RAiN, we recognise that effective governance is needed to navigate diverse perspectives, foster collaboration, and drive impactful outcomes.
Meet the RAiN Team!
Dr Suja Somanadhan
Dr Amy Jayne McKnight
-
Co-Lead, University College Dublin
Dr Suja Somanadhan is an Associate Professor in Children’s Nursing and Co-lead of RAiN at University College Dublin, Ireland. Her primary focus lies in translating evidence into practice within rare genetic diseases. Dr. Somanadhan’s research is deeply rooted in Equity, Diversity, and Inclusion (EDI) principles within the context of Rare Diseases. She is dedicated to fostering fairness, recognising diversity, and actively incorporating the voices and experiences of individuals affected by Rare Diseases. As the founding member and Co-leader of the All-Ireland Rare Diseases Interdisciplinary Research Network (RAiN), she contributes to advancing scientific knowledge and creating a more inclusive and equitable healthcare landscape for those with rare genetic diseases.
Dr. Somanadhan, a recognised leader in healthcare provision for rare diseases in Ireland, has earned prestigious accolades. She was chosen for the Hospital Professional Top 100 in 2023 list and received the Innovative Contribution to Family Nursing Award from the IFNA in 2023. The Fulbright Scholar Health Impact Award in 2019-2020 further acknowledged her exceptional contributions. During her Fulbright fellowship, she collaborated with renowned mentors at the Centre of Rare Disease Therapy at the UPMC Children’s Hospital of Pittsburgh and the Office of Rare Disease Research at the National Institute of Health (NIH) in 2022. More https://people.ucd.ie/suja.somanadhan
-
Co-Lead, Queen’s University Belfast
Amy Jayne McKnight is Professor of Molecular Epidemiology and Public Health within the Centre for Public Health at Queen’s University Belfast. AJ’s research is focused on molecular factors that influence human disease, in particular multi-omic associations with kidney disease, diseases common in ageing populations, and rare diseases. She has participated, led, or helped lead the robust discovery of hundreds of loci for rare diseases and complex polygenic traits, including identifying novel risk factors and biological networks. Together with colleagues, she has helped develop powerful approaches to integrative data analysis, which led to the identification of novel biological pathways for disease. AJ runs busy molecular research laboratories for QUB and coordinates multiple bioresources with associated phenotypic data. She is a rare disease research lead for the NI genomic medicine centre, a founder member of the NI Rare Disease Framework Implementation Group, and runs a focused rare disease research group in Northern Ireland.
-
Network Coordinator, University College Dublin
Ms Melissa Kinch is a Children's Nurse and PhD candidate at University College Dublin with a keen interest in Rare Disease Research. Melissa graduated from University College Dublin in 2021 with a first-class honours BSc. (Children's & General Nursing Integrated), and then completed post-graduate education in Children's Emergency Nursing. Melissa has a keen interest in supporting young people and families living with rare diseases, and in qualitative and participatory approaches to designing health and social care supports for children, young people and families. Melissa's current research explores how healthcare professionals can better support young people and families living with Rare Renal Disorders as they undergo Healthcare Transition. Melissa was appointed Coordinator for the All Ireland Rare Disease Interdisciplinary Research Network in 2023. Since her appointment and through a collaborative effort with the wider RAiN team, Melissa has established a Children's Research Advisory Group (CRAG) and a patient and parent group titled 'Cup O'Collaboration'.
-
Dr Kerry Longmore is a Post Doctoral research associate within the Centre for Public Health at Queen’s University Belfast. Kerry has worked in genetic diagnostics (cytogenetics and molecular genetics), Parkinson’s Disease research and statistical analysis within the NI Cancer Registry. She has spent the past 7 years being an advocate for Rare Disease and has worked alongside the Northern Ireland Rare Disease Partnership, the Rank Foundation, the Patient and Client Council, RARDTAC and was part of the Neurology Review Team. She is currently working to improve educational resources for young people with rare disease. Kerry hopes to increase the level of support for carers to those living with rare disease and is currently the secretary for RD-CaST-NI, a group dedicated to co-developing a rare disease carer support tool in Northern Ireland.
Ms Melissa Kinch
Dr Kerry Longmore