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...
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...
Ashley Appell has been appointed to New York’s Rare Disease Workgroup. Ashley was selected to serve as a patient advocate. She will express patient concerns and goals to the workshop group. The group will then advise New York Assembly representatives regarding public...
