Nottingham: Rare lung disease research centre to give patients 'hope'

The University of Nottingham said millions of people live with rare lung diseases

Experts at the University of Nottingham will help lead a new national research project into rare respiratory diseases.

The LifeArc Centre for Rare Respiratory Diseases is a virtual project that will bring together clinical experts, researchers and patients.

The £9.4m centre aims to enhance tests, treatments and cures for patients with rare lung diseases.

Professor Simon Johnson, who will co-lead the project, said it was a "major boost" for the industry.

The university said the centre's experts would work together in an effort to overcome some of the barriers that can prevent new tests and treatments reaching patients.

Professor Simon Johnson said the centre would be "transformative"

"This is a huge thing for rare lung diseases," said Mr Johnson, a rare lung disease expert based at the University of Nottingham.

"Rare diseases are often poorly recognised by doctors and difficult for researchers to study.

"This funding 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.

"This is going to be a transformative centre for people living with rare lung diseases - from children who often suffer from genetic rare diseases to adults with lung diseases we look after."

The centre has been launched between universities and NHS trusts, with partners in Edinburgh, Nottingham, Dundee, Cambridge, Southampton and at University College London.

Philippa Thomas fell ill with a rare lung disease while covering the US election night in Ohio in 2004

There are more than 300m people living with rare diseases across the world, of which one in 20 are related to respiratory conditions, said the University of Nottingham.

Former BBC News presenter, Philippa Thomas, who has had the rare incurable lung disease Lymphangioleiomyomatosis (LAM) since 2004, said the centre would "give people hope".

"There is so little research funding for rare respiratory diseases, that getting treatment - let alone an accurate diagnosis - really does feel like a lottery," she said.

"It is also terrifying being diagnosed with something your GP will never have heard of.

"I am one of the lucky patients not to be relying on bottles of oxygen or surviving with a lung transplant.

"I am overjoyed at the prospect of [the centre] - it represents new and significant hope for all patients and their families."

LAM Action, a charity that supports people with Ms Thomas's condition, also welcomed the announcement.