Equity For People Living With A Rare Disease: An International Rare Disease Research Symposium

Rare disease’ (RD), refers to a collection of conditions whose signs and symptoms are heterogeneous but are grouped together due to individual low incidence rates. While individually rare, RDs are collective in society and are a significant global public health and policy priority. 80% of RDs are genetic and present at birth, affecting an individual's physical, intellectual, and/or emotional development. RDs are chronic, debilitating, and multisystemic conditions.

Specialist expertise is scarce; patients and families face challenges accessing services and addressing day-to-day care needs, including transition, self-management, and integrated care. As a vulnerable and marginalised population, people living with RD face discrimination, stigma and social-marginalisation at work, school, and leisure. Little is known about the experience of living with an RD from equality, diversity, and inclusion (EDI) perspective. Health and social inequalities are more prevalent amongst those living with RDs than the general population, yet the RD community lacks diversity and representation. Furthermore, information sharing is poor; the results of an international survey conducted by Eurordis - Rare Disease Europe (2021) survey demonstrated that RD respondents were not well-informed of their rights (70%) or financial support entitlements (73%).

Research and building partnerships on interdisciplinary RD is a priority of the European Commission (EU, 2023). To date, more than 2.4 billion euro has been invested in over 440 research and innovation projects (EU, 2023). However, RDs interdisciplinary research initiatives are under-resourced, with no consolidated platform to develop a European Partnership on interdisciplinary research in RD. This symposium will collaborate with existing research partnerships such as RAiN (All Ireland Interdisciplinary Rare Disease Research Network), will inspire and empower early career researchers as emerging leaders, build strategic interdisciplinary partnerships across Europe, and promote educational, research and solution-focused intervention experts' lectures whilst facilitating international network and learning in interdisciplinary research collaboration and investments.

Award Date
05 April 2023
Award Value
Principal Investigator
Dr Suja Somanadhan
Host Institution
University College Dublin
Conference and Event Sponsorship Scheme