Driving research, providing support and improving outcomes for patients and their families affected by rare conditions

On June 30th we celebrated World Pneumothorax Day (WPD) and raised awareness of the rare causes of collapsed lungs.  WPD was started in 2021 with the Myrovlytis Trust to mark the launch of the NHS Familial Pneumothorax Rare Disease Collaborative Network

A pneumothorax occurs when air leaks from the lung causing it to collapse. It can be caused by injury or happens spontaneously, with no cause ever found. However, several rare inherited conditions predispose to pneumothorax including Birt-Hogg-Dubé Syndrome (BHD).

Many of these rare diseases come with other complications so early diagnosis is essential to get the best care possible. That’s why on June 30th we shared resources, interviews and personal patient stories to get people talking about the causes of collapsed lungs and hopefully increase awareness among clinicians.

As well as being active on our Facebook and Twitter pages, we took over Rare Revolution’s social platforms where we shared videos from Stefan Marciniak, Professor of Respiratory Science at the University of Cambridge and Director of the NHS Familial Pneumothorax Rare Disease Collaborative Network.

Other organisations also took part in the day including The European Lung Foundation and Asthma + Lung UK.  They spread the word using #PneumothoraxDay and #WPD22.

We are so grateful to everyone who took part in WPD and to the people who shared their pneumothorax experiences. Although we celebrate WPD on just one day, pneumothoraces affect people every day of the year. At the Myrovlytis Trust, we will continue to raise awareness of the rare causes of collapsed lungs throughout the year and help people with suspected BHD to access genetic testing.