You are here: Home / Rare Disease Information / Patient Organizations Database

Search Patient Organizations

Enter organization name or disease name to search for organizations that help people with rare diseases.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

**IMPORTANT**

The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Hermansky-Pudlak Syndrome Network, Inc.

a/k/a: HPS Network, Inc.

Address

One South Road
Oyster Bay, NY 11771-1905

Phone

516-922-4022

Fax

516-624-0640

800 Number

800-789-9477

TDD

--

Email Address

appell@worldnet.att.net or dappell@hpsnetwork.org

Chapters

1

Website

http://www.hpsnetwork.org/en

The Hermansky-Pudlak Syndrome (HPS) Network is an advocacy organization for individuals and families affected by Hermansky-Pudlak syndrome. HPS is an autosomal recessive inborn error of metabolism characterized by albinism, visual impairment, and a bleeding disorder caused by dysfunctional platelets. Presently, the genes associated with HPS1 through HPS7 have been identified, and identification of more genes is expected. HPS1 and HPS4 involve pulmonary fibrosis, which can become life threatening by middle age. Granulomatous inflammatory bowel disease similar to Crohn's disease occurs in approximately 15% of individuals across all mutations. The HPS Network, established in 1992, is dedicated to networking individuals, physicians and researchers for the purpose of education and research. The network maintains a registry and creates educational materials and newsletters. Annual conferences, international meetings and presentations are among some of the outreach priorities. A cure is the ultimate goal.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.

 
Copyright ©2014 NORD - National Organization for Rare Disorders, Inc. All rights reserved.