RAiN International Symposium:
Equity for People Living with a Rare Disease
The RAiN International Symposium was held in University College Dublin on the 27th June 2023. The focus of the symposium was around equity of care for people living with rare diseases, an issue of utmost importance in healthcare systems in Ireland and Northern Ireland, as well as across the globe.
People with rare diseases often face significant challenges in accessing appropriate diagnosis, treatment, and support due to the lack of awareness and understanding surrounding their conditions. Providing equitable care means ensuring that every person, regardless of their rare disease, has equal opportunity to receive timely and effective care. It involves addressing the unique needs and circumstances of each individual, considering their physical, psychological, and social well-being. By investing in equitable care, we can empower those with rare diseases by alleviating their burden, improving their quality of life, and promoting a more inclusive and fair society. It is not only a matter of justice but also a fundamental step towards achieving optimal health outcomes for all individuals, irrespective of the rarity of their condition.
The symposium was introduced by Dr Suja Somanadhan, Co-Lead of RAiN, who spoke about the network’s purpose and activities to date.
Professor Orla Feely, President of University College Dublin, officially opened the symposium and voiced her support for the network.
Dr Alana Ward from the Republic of Ireland’s National Rare Disease Office and Dr Alison Muir, the Northern Ireland Adult Rare Disease Lead, both gave presentations on the Rare Disease landscape across the two countries, discussing the challenges that face both contexts.
Dr Alison Muir
Dr Amanda Daly from the Health Research Board presented on European Opportunities for Research on Rare Diseases, such as EU partnerships and Horizon grants around rare diseases.
Fine artist Vincent Devine displayed his art at the symposium, which focuses on exploring profound subhects beyond traditional comprehension, from the 'inside out'.
Melissa Kinch
Poster Session
Poster Session
Poster Session
L-R Dominykas Milašius, Dermot Devlin, Professor Lizbeth Goodman, Associate Professor Suja Somanadhan, Dr Lina Jankauskaite, Alan Finglas, Dr Helen McAneney, Professor Amy Jayne McKnight
L-R Dominykas Milašius; Dr Marshall Summar, Dr Helen McAneney, Dr Lina Jankauskaite, Professor Amy Jayne McKnight, Associate Professor Suja Somanadhan, Professor Orla Feely
L-R Dr Lina Jankauskaite, Vicky McGrath, Dr Marshall Summar, Rosaline Callaghan, Dr Alana Ward, Associate Professor Suja Somanadhan, Dr Helen McAneney, Anne Lawlor, Professor Amy Jayne McKnight, Dominykas Milašius, Laura Egan, XXX.
The symposium welcomed a number of international speakers. The first plenary speaker was Dr Lina Jankauskaite.
Dr Lina Jankauskaite is the Head of the Coordinating Centre for Rare and Undiagnosed Diseases at Lithuanian University of Health Sciences Kauno Klinikos, in Lithuania. Dr Jankauskaite spoke about how she and her team are improving the care for people living with rare diseases in their hospital, as they implement Orphacodes, flagging and green pathways for patients with rare diseases. She also discussed how they are raising awareness among students and clinicians about rare diseases.
A panel discussion followed, chaired by Dr Eilish McAuliffe, Professor of Health Systems at University College Dublin. The panel session centred around equity of care, including the barriers and solutions to achieving equity. The panel members included Dr Lina Jankauskaite and Dermot Devlin, a Disabled Rights Activist, Northern Ireland; Anne Lawlor, Chairperson of the 22q11 Ireland Support Group; and Associate Professor Cormac McCarthy, Co-Lead of the Rare Disease Clinical Trial Network.
Following the panel discussion, the event split into two breakout presentation sessions: one centred around research and policy, and the other focused on showcasing the work of Early Career Researchers.
Dr Jankauskaite begins her plenary presentation on Healthcare Equity for People Living with a Rare Disease
Dr Jankauskaite during her plenary presentation on Healthcare Equity for People Living with a Rare Disease
The panelists took questions from the panel chair, Professor Eilish McAuliffe, as well as from the audience
The panel (L-R): Associate Professor Cormac McCarthy, Anne Lawlor, Dr Lina Jankauskaite, Dermot Devlin
Dermot Devlin
Anne Lawlor
Associate Professor Cormac McCarthy
Dr Lina Jankauskaite
Professor Eilish McAuliffe, chairs the panel discussion centred around Equity for People Living with a Rare Disease
The second plenary speaker of the day was Dr Marshall Summar, Director of the Rare Disease Institute Laboratory at Children’s National, Washington DC, USA. Dr Summar’s talked focused around innovations for rare disease care. He spoke about how rare diseases as a field of medicine is growing increasingly relevant to healthcare as more phenotypes of diseases are identified that require specific treatment. He also discussed how clinical trials and the use of machine learning and artificial intelligence are changing how rare diseases patients are cared for.
Following Dr Summar’s presentation, a panel discussion centred around innovations and rare diseases took place, chaired by Dr Amy Jayne McKnight. The panelists included Dr Summar, and Prof Lizbeth Goodman, the Screen 4 Rare Project lead (Ireland), Chair of Creative Technology Innovation and full Professor of Inclusive Design for Education at University College Dublin; Dominykas Milašius, founder of Delta Biosciences; Alan Finglas from Patient Advocates; Rosaline Callaghan, from the Northern Ireland Rare Disease Partnership and Founder of Amyloidosis Ireland, and Dr Avril Keenan, CEO Health Research Charities Ireland (HRCI). The panel discussed how current innovations, such as QR code bracelets and machine learning are working to solve problems in rare disease care.
Following the panel discussion, the symposium was summarised and brought to a close by Vicky McGrath, CEO Rare Disease Ireland.
Dr Marshall Summar during his plenary presentation around Innovations and Rare Diseases
The panelists (L-R): Dominykas Milašius, Dr Avril Keenan, Alan Finglas, Professor Lizbeth Goodman, Dr Marshall Summar, Rosaline Callaghan
Rosaline Callaghan
Dr Marshall Summar
Professor Lizbeth Goodman
Alan Finglas
Dr Avril Keenan
Dominykas Milašius
Vicky McGrath summarised and closed the symposium
Professor Amy Jayne McKnight chaired the panel discussion