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...
Newsroom - Articles
Running with a Purpose
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...
HPS Research Funding Opportunity
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...
HPS Network joins sponsors of the Gordon Research Conference
HPS Network joins sponsors of the Gordon Research Conference (GRC) Promoting Health Across the Lifespan in Developing and Aging Lungs The HPS Network will be one of the sponsors for the upcoming Promoting Health Across the Lifespan in Developing and Aging Lungs, to be...
HPS Network supports virtual pulmonary rehabilitation bill
HPS Network supports virtual pulmonary rehabilitation bill Pulmonary rehabilitation is a critical medical service to improve the quality of life for many people living with chronic lung disease. Medicare covers pulmonary rehabilitation delivered in certain settings,...
Urge Congress to protect crucial funding for NIH and FDA
Urge Congress to protect crucial funding for NIH and FDA The Fiscal Year 2026 (FY26) appropriations process continues! Congress has important decisions to make in the upcoming months regarding the fiscal year 2026 funding for the National Institutes of Health (NIH)...
Protect Medicaid for Rare Disease Patients
Protect Medicaid for Rare Disease Patients In the coming months, Congress could vote on legislation that would cut Medicaid coverage and funding from millions of rare disease patients. We need your help to tell members of Congress to vote NO on cutting Medicaid...
Ad Hoc Group for Medical Research welcomes Congress
The HPS Network joined the Ad Hoc Group for Medical Research in welcoming members of the 119th Congress As a new congressional session begins, the letter introduces the Ad Hoc Group and emphasizes the critical importance of federal investment in NIH to improve the...
Community Champions for Disability Health Challenge finalist
HPS Network finalist in Community Champions for Disability Health Challenge The HPS Network is honored to be one of eight first-round finalists in the National Institutes of Health’s Community Champions for Disability Health Challenge. The prizes encourage...
Dr. Samuel Seward Joins the HPS Network as Chief Medical Officer
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...