Centre champions change for people with rare respiratory disease

On Rare Disease Day 2025 we are highlighting the work of the LifeArc Centre for Rare Respiratory Diseases (RRD). The Centre is working with patients to address the hidden nature of rare lung diseases which often go undiagnosed until significant damage has already occurred.

the silhouettes of two people looking at each other. One person is holding a stethoscope.

The Centre, an ambitious UK-wide programme launched last year, aims to accelerate the development of new treatments and tests to diagnose people living with rare lung diseases.

By uniting children, adults and families affected by relevant conditions with clinical experts, researchers, investors and industry leaders, the Centre will overcome some of the barriers that can prevent new tests and treatments reaching patients with rare lung diseases.

A national collaboration 

The centre is a partnership between Universities and NHS Trusts, co-led by Edinburgh with partners in Nottingham, Dundee, Cambridge, Southampton and at University College London. It is supported by six other clinical partners in Belfast, Cardiff, Leeds, Leicester, Manchester and at the Royal Brompton.

The centre, funded by the not-for-profit medical research charity LifeArc, is co-led by Professor Kev Dhaliwal of the University of Edinburgh’s Baillie Gifford Pandemic Science Hub within the Institute for Regeneration and Repair and Honorary Consultant in Respiratory Medicine at the Royal Infirmary of Edinburgh, NHS Lothian. 

Centred on patients

Core to delivery of the Centre’s mission are the patient groups including Action for Pulmonary Fibrosis, Childhood Interstitial Lung Disease, LAM Action, PCD Research, PCD Support UK and Myrovlytis Trust / Birt-Hogg Dube foundation. Researchers and patient groups will meet in Nottingham on 4 March 2025. 

“I’m incredibly excited about our first patient group meeting” said Professor Kev Dhaliwal, who co-leads the RRD Centre at the University of Edinburgh’s Baillie Gifford Pandemic Science Hub, “it’s a pivotal moment, uniting patients, researchers, and clinicians to collaborate in new ways and accelerate better diagnosis, treatment, and potential cures never done before.

"We believe this groundbreaking, community-driven approach will transform the treatment of rare respiratory diseases by creating a strong, patient-led research network.

“The collaboration will be crucial in advancing our understanding and treatment of these conditions, and we are excited to take this important step forward together.”

Professor Pleasantine Mill, MRC Investigator at the Institute of Genetics and Cancer at the University of Edinburgh and another co-lead of the LifeArc Centre for Rare Respiratory Diseases studies a rare condition called primary ciliary dyskinesia (PCD), a rare, inherited chronic airway disorder present from birth. She said:

“The study of rare genetic diseases such as PCD, provides significant insight into human biology. Investigating these diseases helps us to understand the normal function of proteins and the consequences of genetic variations on those proteins. A critical step is to determine how these protein alterations relate to patient symptoms and disease progression. 

This understanding will help develop new therapeutic approaches for specific patient groups who currently have none available. The LifeArc Centre through its collaborative network offers exciting opportunities for achieving meaningful step-change in this important and neglected field.”

 

You can watch a video about the LifeArc Centre for Rare Respiratory Diseases at the LAM Action website

 

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