Resources- Specific Diagnosis Card Catalog- Hermansky-Pudlak Syndrome

Who to Contact

Hermansky-Pudlak Syndrome Network Inc.
One South Road
Oyster Bay, New York 11771-1905
(516) 922-3440
(800) 789-9HPS
Fax: (516) 922-4022
E-mail: appell@worldnet.att.net
Web: www.medhelp.org

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.

Where to go to Chat with Others

Hermansky-Pudlak Syndrome Web Board

Learn More About It

Hermansky-Pudlak Syndrome
From the National Organization for Albinism and Hypopigmentation (NOAH)

Hermansky_Pudlak Syndrome
From the Online Mendelian Inheritance of Man (OMIM)

Hermansky-Pudlak Syndrome
From eMedicine

Links

Hermansky-Pudlak Syndrome Network Inc.