Ashley Appell appointed to New York State Rare Disease Advisory Council Ashley Appell, the original member of the HPS Network, was nominated to serve on the recently created New York State Rare Disease Advisory Council by James McDonald, M.D., M.P.H., the New York...
HPS Network supports SOAR Act (S. 1406, H.R. 2902) 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. 1406, H.R. 2902). The legislation would reform...
HPS Network honored by National Organization for Rare Disorders The HPS Network is one of the honorees of this year’s Rare Impact Awards given by the National Organization for Rare Disorders (NORD®). Each year NORD recognizes rare disease heroes —individuals or groups...
Dr. Wilfredo De Jesus Rojas runs with a purpose honoring patients with HPS at Bay to Breakers, 2025 Dr. Wilfredo De Jesus Rojas ran the 15K Fun Run, called Bay to Breakers, in honor of the Hermansky-Pudlak Syndrome community during the American Thoracic Society’s...
The Peer Reviewed Medical Research Program (PRMRP) is accepting letters of intent for research grants. Hermansky Pudlak Syndrome is one of the diseases eligible to be considered for funding. This year, the program is accepting transitional and clinical research...
