RESEARCH RESULTS
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 DetailsThis 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 UpdateThere have been several...
EL-PFDD Meeting held on June 10, 2022
This meeting was held June 10, 2022 and brought together representatives of the FDA, pharma and other interested parties to listen to the needs of the HPS community. The report that will come from this meeting will be used by the FDA and pharma to help analyze the...
Special Strain of Mice to Study Human Disease
Research continues as shown by this article. A murine model(special strain of mice to study human disease) has been developed for the study of HPS pulmonary fibrosis. A different mode of putting Bleomycin ( a chemotherapeutic antibiotic) into the mice model was...
COVID in Communities
This survey was used to determine whether a rare condition predisposes a person to more or less severe COVID symptoms.