The Hermansky-Pudlak Syndrome Network Inc. is a not for profit support group for people and families dealing with Hermansky-Pudlak Syndrome (HPS) and related disorders such as Chediak Higashi Syndrome. The HPS Network was founded in 1992 and incorporated in 1995.
Our mission is to gather and disseminate information, to promote awareness and research, and to provide support to our members. This keeps us actively developing educational materials, pamphlets, slides, and articles to help both families and professionals understand the needs created by this syndrome. We maintain a client registry to assist with networking individuals, with each other and with medical research. We have a toll free number for access and to register families when they call.
When a family or person with HPS calls the Network, we answer questions they have about the syndrome and we send them an educational packet. We also offer them the opportunity to give us their doctors and nurses addresses and we send a professional packet to them as well. Twice yearly we try to publish a newsletter, highlighting new information and achievements. Every year, we have a Family Conference for three days at a hotel on Long Island, New York. The physicians who are actively involved in the research spend time with us and explain the research findings for the year.
The HPS Network is invited to lecture occasionally 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 epidemiology of HPS. We maintain this web site and answer E-mail on a daily basis. Most of all, we provide support and a 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.