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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...

Rare Disease Workgroup Appointment

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...

Pharma listens to the HPS story

Donna Appell, Executive Director and Founder of the HPS Network, delivered a presentation about Hermansky-Pudlak Syndrome and the HPS Network to the 2022 Corporate Meeting of the American Thoracic Society (ATS). The meeting is attended by representatives of the...

Monthly Virtual Events

Mark your calendars to join us monthly for our virtual events! The information on all upcoming meetings can be found on our virtual events page.  Links to all events are included in our member emails.  If you aren’t receiving them or want to become a member,...

Dysregulated Myosin in HPS lung fibroblasts

Subject: Dysregulated myosin in Hermansky-Pudlak syndrome lung fibroblasts is associated with increased cell motility – PubMed Researchers continue to study pulmonary fibrosis in the HPS population.  Myosin is a protein that has a role in muscle contraction....