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...
Newsroom - Articles
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...
Special Strain of Mice to Study Human Disease
Research continues as shown by this article. A murine model(special strain of mice to study human disease) has been developed for the study of HPS pulmonary fibrosis. A different mode of putting Bleomycin ( a chemotherapeutic antibiotic) into the mice model was...
Update on Medical Device Nonvisual Accessibility Act (H.R. 4853)
Progress has been made finding co-sponsors for the Medical Device Nonvisual Accessibility Act (H.R. 4853). The National Federation of the Blind, the organization leading the effort on this bill, held their annual Hill Day and were able to generate some results. Now,...
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...
Medical Device Nonvisual Accessibility Act introduced in the U.S. House of Representatives
U.S House of Representative Jan Schakowsky (D) IL introduced H.R. 4853, the Medical Device Nonvisual Accessibility Act to the U.S. Congress. The bill calls upon the Food and Drug Administration to promulgate non-visual accessibility standards for Class II and Class...
CB1R and iNOS are distinct players promoting pulmonary fibrosis in Hermansky–Pudlak syndrome
View the article at: https://onlinelibrary.wiley.com/doi/10.1002/ctm2.471 CB1R - and - INOS (Download this full article in a PDF printable format. 20 pages.) Click this link or the image below to access the full article.
HPS Network partners with NIH to create HPS Fellowship
The HPS Network has partnered with the lab of Dr. William Gahl at the National Institutes of Health Genetic Research Institute to create a post/doc position devoted to gene therapy research of HPS. The donation to cover the salary for two years has been given by the...