2nd Annual Conference
Join us for our 2nd Annual Conference on 25th March 2025 at the Hyatt Regency in Manchester, running from 9:30 AM to 4:30 PM.
This year’s conference theme, “Demystifying the Landscape”, invites us to take a closer look at the people, partnerships, and progress driving the rare disease research ecosystem.
Together, we’ll explore the vital roles of researchers, industry, patient groups, and exciting new collaborations, celebrating the progress we’ve made and uncovering opportunities to work even more closely as a community.
Agenda
| Time | Session |
|---|---|
|
9.30am – 10.00am |
Registration and refreshments |
|
10.00am – 10.10am |
Welcome from our host nodes: REOLUT, ELSI and EpiGenRare |
|
10.10am – 10.40am |
Welcome from the Hub and platform highlights from the last year |
|
10.40 am – 11.00 am |
Dept. Of Health and Social Care Presentation: How is the UK Rare Disease Research Framework supporting better research? |
|
11.00am – 11.20am |
Break & Networking |
|
11:20 am – 12.30 pm |
What does our rare disease research landscape look like in 2025?
for rare disease research in 2025 and beyond |
|
12.30 pm – 1.45 pm |
Lunch & Networking |
|
1.45 pm-2.00 pm |
Celebrating best practice in Patient and Public Involvement and Engagement! Presentation of the inaugural Early Career Researcher Award in PPIE |
|
2.00 pm– 2.30 pm |
Training and capacity building needs in rare disease research. How do we train the next generation of rare disease researchers? |
|
2.30 pm – 3.10 pm |
Discussion Panel Partnering with Industry and Shaping Regulatory Frameworks for Rare Disease Innovation |
|
3.10 pm – 3.25 pm |
Short Break |
|
3.25 pm – 4.05 pm |
Discussion panel Optimizing Data and building Future-Ready Registries for Research and Patient Impact |
|
4.05 pm – 4.15 pm |
Wrap up and close |
Stay tuned for updates on our much awaited lineup of speakers and panellists!
Node Annual Conferences
The Manchester Nodes—ELSI, REOLUT, and EpiGenRare—will each be hosting their Annual Conferences on 26 March 2025 at the Hyatt Regency in Manchester.
