£9.4 Million Research Centre for Rare Respiratory Diseases

£9.4 Million Research Centre for Rare Respiratory Diseases

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.

Congratulations to our LAM Researchers

Congratulations to our LAM Researchers

LAM Action congratulates Dr Suzanne Miller, a Senior Research Fellow working in Professor Simon Johnson’s lab, on being named the British Thoracic Society’s Early Career Investigator of the Year for her work in LAM. Dr Miller was one of six finalists from a field of 63. This prestigious prize is highly competitive and awarded by the British Thoracic Society (BTS) to the “very best basic, translational or clinical research performed in the UK respiratory community by early career investigators.” The BTS awards the prize based on the “quality and content of the research performed, the quality of the abstract submitted and in short-listed candidates, the quality of the oral presentation given at the Early Career Investigators Symposium at the BTS Winter Meeting.”

We are also pleased to report that Dr Miller, along with Dr Debbie Clements and Dr Roya Babaei-Jadidi, who also work in Professor Johnson’s lab, presented their work in LAM over the course of three talks at the November 2022 BTS Winter Meeting in London. The U.S. LAM Foundation funded the work presented by Dr. Miller, and LAM Action and the Medical Research Council funded the work presented by Drs Clements and Babaei-Jadidi. We are thrilled that their important research into LAM was highlighted at such a prestigious event.

LAM and Pregnancy

When deciding whether to become pregnant or not, women with LAM often ask about the possible effects of pregnancy on their LAM, and also on the effects of having LAM on their pregnancy and their baby. We have published a flyer that addresses LAM and pregnancy, which we hope you will find helpful. To download a copy of the flyer, please click here.