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.
We are a 501c3 non-profit organization founded in 1992 and incorporated in 1995.
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.
Upon registering with the HPS Network a “Welcome Packet” is sent to provide resources to read and share with care providers. We also offer them the opportunity to give us their doctors’ and nurses’ addresses to send them a professional packet as well.
We publish an e-newsletter 10 times a year highlighting new information and achievements.
Every year, we host a Family Conference for three days at a hotel on Long Island, New York, as well as an annual conference in San Juan, Puerto Rico for both families and physicians.
A highlight of our calendar is a medical symposium for the scientists/physicians that are actively involved in HPS research. This meeting is a hallmark of our research agenda which provides a venue of collaboration and innovation to advance HPS science and is the only one of its kind in the world.
The HPS Network is frequently lecturing and encourages opportunities for public speaking because outreach is a priority. We are invited to schools, hospitals, conferences, and health fairs to speak about genetics and the impact and incidence of HPS. We maintain this website and an office staffed to answer e-mails, texts and phone calls on a daily basis. Most of all, we provide comfort and fellowship and a credible place to turn for information about Hermansky-Pudlak Syndrome for those people feeling the isolation of such a rare disease.
Thank you for your interest.