The 1st ELSI Node Annual Conference will be held on 26 March 2025 at Robinson Room, Hyatt Regency, Manchester.
This event is an exciting opportunity to bring together researchers, healthcare professionals, and patient support groups to share experiences, cases, and insights on the Ethical, Legal, and Social Issues (ELSI) surrounding rare conditions.
Plenary session: ” Paediatric rare condition clinical trials and what matters to children, young people and families”.
Simon Jones – University of Manchester & Gracie Mellalieu
Panel discussion: “Patients’ and families’ priorities about clinical trials and treatments”.
As part of a breakout discussion later in the day, we will explore three topics, each linked to one of the three projects within the ELSI node.
To ensure productive and engaging conversations, we’d like to group participants based on their topic of interest. If you could kindly select a topic using this link, it would be a great help in organizing the session.
The deadline for registration is 10th March 2025 (17:00, GMT).
Please note that we are unable to cover costs for travel, accommodation and subsistence to general delegates, i.e. attendees who are not presenting as a plenary speaker or panel member.
Agenda
Registration & Coffee (9.00 – 10.00)
| Time | Topic |
|---|---|
|
10.00 – 10.05 |
Welcome and introduction to the ELSI node Ramona Moldovan & Tara Clancy (University of manchester) |
|
10.05 – 11.00 |
Plenary Session: Paediatric rare condition clinical trials and what matters to children, young people, and families Speakers: Simon Jones (University of Manchester) & Gracie Mellalieu |
Break (11.00 – 11.30)
| Time | Topic |
|---|---|
|
11.30 – 13.00 |
Panel Discussion: Patients’ and families’ priorities about clinical trials and treatments Chair: Sinduja Manohar (VOCAL & We R Rare) Panel: Arti Patel (Treacher Collins Family Support Group), Sarah Wynn (UNIQUE), Emily Clarke (GenePeople), Amy Hunter (Genetic Alliance UK) |
Lunch (13.00 – 14.00)
| Time | Topic |
|---|---|
|
14.00 – 15.00 |
Node presentations and breakout discussions
|
|
15.00 – 16.00 |
Feedback & other initiatives: ELSI in Rare Conditions
|
