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 LifeArc Centre for Rare Respiratory Diseases (RRD) addresses the hidden nature of rare lung diseases 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.Funded by the not-for-profit medical research charity LifeArc, it is co-led by Professor Kev Dhaliwal at the Institute for Regeneration and Repair and Professor Pleasantine Mill at the Institute of Genetics and Cancer. 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. 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 Kev Dhaliwal University of Edinburgh’s Baillie Gifford Pandemic Science Hub Professor Pleasantine Mill studies a rare condition called primary ciliary dyskinesia (PCD), an inherited chronic airway disorder present from birth. 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. Professor Pleasantine Mill MRC Investigator at the Institute of Genetics and Cancer Kev Dhaliwal Research Group Pleasantine Mill Research Group LifeArc Translational Centres for Rare Diseases Tags 2025 Publication date 28 Feb, 2025
