PRESS RELEASE Dr. Samuel Seward Joins the HPS Network as Chief Medical Officer Oyster Bay, N.Y. – Dr. Samuel Seward has joined the HPS Network as Chief Medical Officer. Dr. Seward has a long history of serving the HPS community. He was a founding member of the HPS...
Newsroom - Articles
HPS Included in 2025 DoD Research Program
HPS Included in 2025 DoD Research Program Oyster Bay, NY – In August, the Senate Appropriations Committee unanimously approved the Defense Appropriations bill in a 28-0 vote. For the first time, the committee report accompanying this bill includes...
Supplemental Oxygen Access Reform (SOAR) Act
HPS Network supports SOAR Act (S. 3821, H.R. 7829) The HPS Network joins with a coalition of other patient advocacy groups and interested professionals to support the Supplemental Oxygen Access Reform Act or SOAR Act (S. 3821, H.R. 7821). The legislation would...
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. If you are interested and able to meet with your members of Congress either virtually or in person, please send us your...
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...
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...