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2025 NORD Rare Impact Award Winner

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...

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,...