Hermansky-Pudlak Syndrome

Who to Contact
Where to Go to Chat with Others
Learn More About It
Web Sites
Search Google for "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
hpsnet@worldnet.att.net
http://www.hpsnetwork.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
  This is an online source of support and information for adults with Hermansky-Pudlak Syndrome or related syndromes involving albinism.
  
  
• HPS Families
  This is an online source of support and information for families affected by Hermansky-Pudlak Syndrome.

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
  
  
• Hermansky-Pudlak Syndrome
  From Gene Reviews

Web Sites

• Hermansky-Pudlak Syndrome Network Inc.
  

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Last Updated 12/08/2006 by familyvillage@waisman.wisc.edu
Document Source: http://www.familyvillage.wisc.edu/lib_hp.htm