LAM Action welcomes the announcement of a new £9.4 million research centre involving researchers from the University of Nottingham. For the first time ever, there will be a hub connecting people affected by rare respiratory diseases with a network of clinical experts, researchers, investors, and industry leaders across the UK. Professor Simon Johnson, director of the UK centres for LAM and Rare Cystic Lung Diseases in Nottingham, will co-lead the centre, which is being funded by the not-for-profit medical research charity LifeArc. “Rare diseases are often poorly recognised by doctors and difficult for researchers to study,” said Professor Johnson who has played a pioneering role into research into LAM and leads the National Centre for LAM clinical care in Nottingham. This funding from LifeArc is a major boost for UK rare lung disease research that will raise the profile of rare diseases, reduce diagnostic errors and enable the development of treatments for these currently incurable conditions.”

With a budget of £9.4 million, the new LifeArc centre will establish a nationwide biobank housing patient samples and disease models that will allow researchers to advance pioneering therapies and engage with industry and regulatory partners to develop innovative human clinical studies. The new centre will also significantly boost public awareness of the realities of living with rare respiratory diseases and patient awareness of resources that can improve their quality of life. 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.

To read our press release in full, please see Press-Release-for-Rare-Respiratory-Disease-Centre.