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Join Our Team of Advocates

Did you know the HPS Network advocates for federal research funding?  Rick Bowman has been championing this cause for us and he needs your help. We're gathering a team of advocates to help secure federal resources for Hermansky-Pudlak Syndrome research.  The HPS...

2023 Lung Disease Week at the ATS

The American Thoracic Society (ATS) Public Advisory Roundtable (PAR) is hosting its eleventh annual “Lung Disease Week at the ATS” series this year.  This is a society-wide initiative that recognizes the many lung and airway disorders for which ATS PAR member...

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....

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...

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...

RAREis Scholarship

Pursue Your Dreams through the #RAREis Scholarship Fund The #RAREis Scholarship Fund was established in 2020 to help young adults with rare diseases to pursue their dreams through education. Thanks to the support of the #RAREis program by Horizon Therapeutics, The...

HPS Network awarded an additional $150,000 grant

The HPS Network was awarded a $150,000 grant on January 31, 2022, as part of the Rare As One (RAO) Network, a program of the Chan Zuckerberg Initiative (CZI).  The HPS Network is currently completing a two-year grant from CZI.  The first grant has allowed the Network...

February 28 is Rare Disease Day!

The HPS Network celebrated Rare Disease Day 2021 by hosting a rare disease trivia on Gatherly. Thanks to our graduate student interns who helped curate the facts used for the event! Our membership was asked to spread awareness by sharing their stories on social media....