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 & Poster Presentation |
|
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 |
Speakers and Panellists
Nicole Le Grand (Life Arc)
Vanessa Newman (Rare Therapies Launchpad)
Laura Cowley (Patient Led Research Hub)
Amy Hunter (Genetic Alliance UK)
Victoria Hedley (Newcastle University)
Dave Jones (Newcastle University)
Louise Oni (University of Liverpool/ UCL Centre for Bladder and Kidney Health/ GOSH NHS Trust)
Neil Watson (Newcastle upon Tyne Hospitals NHS Foundation Trust)
Speakers and Panellists
Marie Labus
AMlo Biosciences
Marie has a PhD in Molecular Biology/Immunology and has over 20 years of business experience including creating and managing spin out companies. Previously she successfully developed a vaccine for farmed fish, taking it from concept, through field trials, and regulatory approval by the Veterinary Medicine Directorate. She is now the CEO AMLo Biosciences, a female founded, and female led diagnostic company based in Newcastle upon Tyne. She remains research active and drives the commericalisation pathway for AMLo’s product pipeline of prognostic and diagnostic products. She has raised over £8 million in equity funding for AMLo since 2018 from a mixture of VCs, business angels and family offices.
Dan O'Connor
ABPI
Dan O'Connor is medically and PhD qualified and currently the Director Regulatory and Early Access Policy at The Association of the British Pharmaceutical Industry (ABPI). He joined the ABPI from the Medicines and Healthcare products Regulatory Agency in 2023. At the MHRA he was Deputy Director of the Innovation Accelerator and Regulatory Science. Dan has special interests in drug development, rare diseases, regulatory science, health innovation, patient engagement and drug repurposing. He completed higher medical training in Pharmaceutical Medicine. He is Editor-Author of the Oxford Specialist Handbook in Pharmaceutical Medicine. She remains research active and drives the commericalisation pathway for AMLo’s product pipeline of prognostic and diagnostic products. She has raised over £8 million in equity funding for AMLo since 2018 from a mixture of VCs, business angels and family offices.
Catriona Crombie
LifeArc
Dr Catriona Crombie is an expert in translational medicine, specifically moving research out of universities and into the commercial environment. She has worked for over 15 years in research funding in the state and charity sectors. Catriona is the Head of the LifeArc Rare Disease Translational Challenge. She is responsible for LifeArc’s rare disease research portfolio, which includes grant funding for academics to progress their research towards patient impact as well as the awards made in partnership with others e.g. Innovation Hubs for Gene Therapy funded in partnership with the MRC. She remains research active and drives the commericalisation pathway for AMLo’s product pipeline of prognostic and diagnostic products. She has raised over £8 million in equity funding for AMLo since 2018 from a mixture of VCs, business angels and family offices.
Victoria hedley
Newcastle University
dave jones
Newcastle University
dave jones
Newcastle University
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.
