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Clinical Trial Readiness Webinar

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....

Oral Pirfenidone for the Pulmonary Fibrosis of HPS

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...

A Longitudinal Study of HPS Pulmonary Fibrosis

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...

2023 Mother’s Workshop

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...

HPS Story featured on The Story Collider

HPS Network Founder and Executive Director Donna Appell recently shared the HPS story on The Story Collider, a podcast featuring personal stories related to science. The Story Collider was featuring stories from Rare As One, a project of the Chan Zuckerberg...