Driving research, providing support and improving outcomes for rare disease patients and their families



Today is the first ever World Pneumothorax Day and is celebrating the launch of the NHS Familial Pneumothorax Rare Disease Collaborative Network.

Familial pneumothorax accounts for around 10% of all spontaneous pneumothoraces. Did you know that Birt-Hogg-Dubé Syndrome is the most common monogenic disorder diagnosis? We want to raise awareness of BHD and encourage you to #ThinkBHD – especially if there’s a family history of pneumothorax.

Diagnosing BHD and other rare diseases earlier can lead to substantial improvements in the standard of care a patient receives and their overall quality of life which is a core value of the Myrovlytis Trust’s mission.