Welcome to our 2026 Annual Gathering!
Hannah Mitchison, Day Chair, Centre Leadership Team; Issy MacGregor, Patient and Public Involvement Manager; Bruna Rubbo, Mid- and Early-Career Researchers’ Champion

The Centre We Are Building
Kev Dhaliwal, Centre Lead; Bradley Price, Chair, Lived Experience Advisory Panel

Keynote: From Models to Medicines – Speeding Up Our Translation Pathway in Rare Respiratory Disease
Stuart Elborn, Chair of Respiratory Disease, LifeArc

Audience discussion and Q&A
Chaired by Stephen Hart, University College London

Session chaired by Claire Jackson and Bradley Price

In vitro models of familial pulmonary fibrosis (FPF) for high-throughput drug screening
Sara Cuevas Ocaña, University of Cambridge

CRISPR-based strategies for cell modelling primary ciliary dyskinesia; leveraging use of an airway cell line and research consented patients’ nasal biopsy samples from a Southampton PCD bioresource
Melanie Smith, University of Southampton

Lymphangioleiomyomatosis (LAM) model development and outcome measures
Roya Babaei-Jadidi, University of Nottingham

Session chaired by Neil Carragher and Lucy Dixon

Mapping challenges in the delivery of care for primary ciliary dyskinesia (PCD), an international survey on barriers and priorities
Bruna Rubbo, University of Southampton

Samuraciclib as a treatment for lymphangioleiomyomatosis (LAM)
Debbie Clements, University of Nottingham

Restoration of cilia motility via mRNA therapy in primary ciliary dyskinesia
Eriomina Shahaj, University College London

Session chaired by Simon Johnson

LifeArc-Kidney Research UK Centre for Rare Kidney Disease
Louise Oni, Centre Lead, University of Liverpool

LifeArc Centre for Rare Mitochondrial Diseases
Patrick Chinnery, Centre Lead, University of Cambridge

LifeArc Centre for Acceleration of Rare Disease Trials
Timothy Barrett, Co-Lead, University of Birmingham

Our vision, progress and next steps
Nik Hirani and Amelia Shoemark, Work Package Leads

A Trusted Research Environment for Rare Respiratory Diseases
Kev Dhaliwal, Centre Lead

Strategic Opportunities Panel
Chaired by Clare Lyon and Stefan Unger
Panellists: Amelia Shoemark, Nik Hirani, Kev Dhaliwal, Wilna Oosthuyzen, Simon Johnson, Erin Cant, Deepa Patel, Jagtar Nijjar

Session chaired by Stefan Marciniak and Laura McDiarmid

Group activity: Mission Impossible to Ignore
Discussion facilitators:
• Clare Lyon, LEAP Member
• Laura McDiarmid, Centre Research Communications Manager
• Nadhirah Abd Hadi, University of Nottingham
• Adam Hetherington, University of Edinburgh
• Mel Smith, University of Southampton
• Eliza Lyka, University of Cambridge

Panel discussion: exam questions!
Session chaired by Jo Pisani and Kev Dhaliwal
Panellists: Stefan Marciniak, Hannah Mitchison, Harriet Holme, Andreas Guenther, Elizabeth Estes, Bruna Rubbo, Roya Babaei-Jadidi, Neil Carragher

Reflections
Alessandra Gaeta, Senior Director Rare Disease Network, LifeArc

Awards
• Poster Prize – Scientific Excellence
Recognising outstanding scientific quality, innovation and translational potential.
• Poster Prize – Research Communication and Engagement
Recognising outstanding communication of research, including its relevance to patients and the public, clarity and accessibility.
• Prize – Best Research Talk
Recognising an outstanding research presentation, combining scientific quality, clarity, engagement and effective communication.

Awards judged by Hannah Mitchison, Neil Carragher, Simon Johnson and Bradley Price