Hermansky-Pudlak Syndrome Network Inc.
One South Road
Oyster Bay, New York 11771-1905
Fax: (516) 922-4022
This a volunteer, not-for-profit, self-help support group for persons and families dealing with Hermansky-Pudlak Syndrome. Founded in 1992, its membership has grown to include persons from all around the world. It does not diagnose or treat HPS, nor does it provide genetic counseling. We are involved in networking individuals, families and doctors for the purpose of education and research. We publish a newsletter, a pamphlet, and maintain a bibliography of materials on Hermansky-Pudlak Syndrome. We hold an annual Family Conference for education and support. Each year we become closer finding strength and courage in each other, knowing that we are a large genetic family whose connection lies at the very core of human existence. We promote research activities and are presently involved in research at the National Institute of Health and the University of Minnesota.