The American Thoracic Society is holding it’s annual conference in Washington DC this year. On Saturday, May 20th is a FREE Patient/Family education day event. This year’s talks will focus on providing pulmonary healthcare access for all. The details...
On Thursday, November 10th, the American Thoracic Society (ATS) presented as part of the “Lung Disease Week at the ATS” initiative – a program designed to facilitate information exchange between patients and experts on matters relating to lung and airway disorders....
This trial investigated the use of Pirfenidone, brand name Esbriet, to treat the pulmonary fibrosis of Hermansky-Pudlak Syndrome: Study Details This original trial involved 21 participants and showed that the drug was somewhat helpful in slowing the development of...
This study looked at those at high risk for developing pulmonary fibrosis to detect early disease. The aim was to try to identify biomarkers that could help those in the future get treatment sooner. Click to view the June 2020 Study...
Mothers!! Join us for our annual Mothers’ Workshop with Sheila Adamo, LCSW, CADC This workshop provides an opportunity for mothers of children with HPS to connect, learn and empower one another. Participants will have an opportunity to process the many...
