Hps Network

Our Mission To provide education and vital support programs to individuals and families with Hermansky-Pudlak syndrome while striving for improved care and innovative research on our journey to cure. our-mission We are a 501c3 non-profit organization founded in 1992 and incorporated in 1995. Our Work: To achieve this goal, the HPS Network gathers and disseminates information, promotes awareness, funds research, and provides support to our members. This keeps us actively developing educational materials, pamphlets, presentations, and articles to help both families and professionals understand the needs created by this syndrome. We maintain a contact and symptom registry to assist with informing and networking individuals, recruiting for research trials and facilitating frequent communications. We have a toll free number to provide access to support with a bilingual office ready to help.