|About Hermansky-Pudlak Syndrome Network
The Hermansky-Pudlak Syndrome Network Inc. is a volunteer self help, not for profit support group for people and families dealing with Hermansky-Pudlak Syndrome (HPS) and related disorders such as Chediak Higashi Syndrome. Hermansky-Pudlak Syndrome (HPS) is a genetic metabolic disorder which causes albinism, visual impairment, and a platelet dysfunction with prolonged bleeding. Founded in 1992 the HPS Network’s mission is to gather and disseminate information, to promote awareness and research, and to provide support to members.
They actively developing educational materials, pamphlets, slides, and articles to help both families and professionals understand the needs created by this syndrome. HPS Network also maintains a client registry to assist with networking individuals, with each other and with medical research and operate a toll free number for access and to register families when they call.