The LifeArc Centre for Rare Respiratory Diseases will unite children, adults and families affected by relevant conditions with clinical experts, researchers, investors and industry leaders.
The centre’s experts will work in collaboration, aiming to overcome some of the barriers that can prevent new tests and treatments reaching patients with rare diseases.
Accelerate treatments
Globally, there are more than 300 million people living with rare diseases, of which one in 20 are related to respiratory conditions. While rare on their own, collectively they represent significant social and economic costs.
The new centre will focus on rare lung diseases to accelerate diagnosis and development of much-needed therapies.
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 Royal Brompton.
Building partnerships
The collaboration will create a UK-wide bank of anonymised tissue samples and models of disease, allowing researchers to advance pioneering therapies.
It will work to lower the risk of investment in rare respiratory disease research, building the partnerships and innovative infrastructure needed for clinical trials in patients with rare conditions.
The centre team also aims to boost public awareness of the realities of living with rare respiratory diseases and raise patient awareness of resources that can improve their quality of life.
The centre, funded by the not-for-profit medical research charity LifeArc, is led by Professor Kev Dhaliwal, Professor of Healthcare Technology at the University of Edinburgh’s Institute for Regeneration and Repair and Honorary Consultant in Respiratory Medicine at the Royal Infirmary of Edinburgh, NHS Lothian.
It is supported by patient groups including Action for Pulmonary Fibrosis, Childhood Interstitial Lung Disease, LAM Action, PCD Research and PCD Support UK.