Date: Wednesday 26th March 2025.
Time: 10:00 – 16:00.
Location: Hyatt Regency, Manchester.
Following the RDRUK’s 2nd Annual conference on the 25th March 2025, the ELSI Node hosted its 1st Conference on 26th March 2025 at the Hyatt Regency, Manchester.
This Conference explored the ethical dimensions of rare disease research with a focus on lived experience and patient-centred practice. A compelling plenary session opened the day, where Simon Jones (University of Manchester) and a family affected by a rare condition shared powerful insights into what matters most to children, young people and families participating in rare disease trials.
A mid-morning panel discussion, chaired by Sinduja Manohar (VOCAL & We R Rare), brought patient advocates and family representatives into meaningful dialogue about clinical trial priorities and treatment experiences.
Afternoon sessions featured breakout presentations addressing key themes: trial impact and outcomes, challenges faced by undiagnosed individuals, and barriers to genomic mainstreaming. The day concluded with an open session on emerging ELSI initiatives.
