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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....

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...

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...

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...

Join Us on June 10, 2022

Mark your calendars to join us and make HPS history advocating for future treatments. The HPS Network will host an Externally-Led Patient Focused Drug Development meeting on June 10, 2022. This meeting will be open to the public, with speakers and attendees attending...

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...