Our work
Working across the UK we will initially focus on three exemplar conditions.
– Rare cystic lung disease (RCLD)
– Rare interstitial lung disease (RILD)
– Primary ciliary dyskinesia (PCD)
Together, we’re building a future where people with rare respiratory diseases can live longer, healthier lives. Whether you’re a patient, researcher, clinician, or industry partner—there’s a place for you here.
What makes this Centre special?
We address the gap in lung research, an area that receives less than 2% of public health funding. By uniting patients, clinicians, researchers, and industry, we create a single hub where lived experience and collective expertise drives scientific and clinical innovation in a space that often feels neglected.
Focussing on rare and ultra-rare rare respiratory diseases, including in children where no therapies exist, we act as a unifying beacon to accelerate new treatments, improve the lives of patients and gain sufficient momentum to influence policy and funders.
Through coordinated expertise in respiratory science and therapy development, our work not only meets urgent unmet needs in rare respiratory diseases but will also offer discoveries that benefit common respiratory diseases.
Our aims
How we improve treatment outcomes for all affected by rare respiratory diseases
Patient-first innovation
We put patients at the heart of everything we do. Patient voices and lived experiences will shape our research and are guided by a Lived Experience Advisory Panel alongside an Independent Scientific Advisory Board that ensures our work stays meaningful and impactful.
Central biobank
We’re building a connected UK-wide network of 11 specialist centres to register patients, capture clinical data, and collect samples for a centralised rare respiratory disease biobank. Our national initiative will:
- Register more than 5,000 patients with rare respiratory diseases
- Collect and store valuable clinical data and patient samples
- Create a centralised UK biobank to power research and innovation
Modelling disease
To develop effective treatments, we first need to understand the diseases.
We’re building a resource of advanced 2D and 3D lab models that mimic the human lung. These models help us discover key disease markers and test drugs safely and efficiently.
New therapies
We’re using our disease models and UK biobank to speed up the development of life-changing treatments.
Our two-pronged approach is about:
- Drug Repurposing: Screening existing medicines to find new uses for rare respiratory diseases
- Gene Therapy: Developing cutting-edge novel genetic therapies aimed at long-term cures
Shaping the future of care
We’re not just developing treatments—we’re shaping the future of care. We’re creating the next generation of experts through new training programmes like the MB/PhD track and Rare Respiratory Diseases NHS Innovation Fellowships to develop clinical leaders in this vital field — while working closely with patients, clinicians, industry and policymakers to raise awareness and drive change.