NORD's
Washington Office
 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
|
|
|
The National Organization for Rare Disorders (NORD) web site, its databases,
and the contents thereof are copyrighted by NORD. No part of the NORD web
site, databases, or the contents may be copied in any way, including but not
limited to the following: electronically downloading, storing in a retrieval
system, or redistributing for any commercial purposes without the express
written permission of NORD. Permission is hereby granted to print one hard
copy of the information on an individual disease for your personal use,
provided that such content is in no way modified, and the credit for the
source (NORD) and NORD’s copyright notice are included on the printed copy.
Any other electronic reproduction or other printed versions is strictly
prohibited.
The information in NORD's Rare Disease Database is for educational purposes only. It
should never be used for diagnostic or treatment purposes. If you have questions regarding
a medical condition, always seek the advice of your physician or other qualified health
professional. NORD's reports provide a brief overview of rare diseases. For more specific
information, we encourage you to contact your personal physician or the agencies listed as
"Resources" on this report.
Copyright 1993, 2000, 2004
Synonyms of Floating Harbor Syndrome
- FHS
- Pelletier-Leisti syndrome
Disorder Subdivisions
General Discussion
Floating-Harbor syndrome (FHS) is an extremely rare disorder characterized by short stature, delayed language skills, and a triangular shaped face. A broad nose, deep-set eyes and a wide mouth with thin lips give an affected individual a distinct appearance. FHS was named after the hospitals at which the first two cases were seen: the Boston Floating Hospital and Harbor General Hospital in California. The cause of this disorder is not known.
Organizations related to Floating Harbor Syndrome
- Floating Harbor Syndrome Support Group
1964 Sheffield Road
Harmony NC 28634
Phone #: 336-831-6955
800 #: --
e-mail: littleflock7@gmail.com
Home page: http://www.floatingharborsyndromesupport.com
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Home page: http://rarediseases.info.nih.gov/GARD
- Human Growth Foundation
997 Glen Cove Avenue
Glen Head NY 11545
Phone #: 516-671-4041
800 #: 800-451-6434
e-mail: hgf1@hgfound.org
Home page: http://www.hgfound.org/
- MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay WI 54301-1243
Phone #: 920-336-5333
800 #: 877-336-5333
e-mail: mums@netnet.net
Home page: http://www.netnet.net/mums/
- NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
1 AMS Circle
Bethesda MD 20892-3675
Phone #: 301-495-4484
800 #: 877-226-4267
e-mail: NIAMSinfo@mail.nih.gov
Home page: http://www.niams.nih.gov/Health_Info
- Restricted Growth Association
PO Box 1024
Peterborough Intl PE1 9GX
Phone #: 030-0 1-11 1970
800 #: --
e-mail: office@restrictedgrowth.co.uk
Home page: http://www.restrictedgrowth.co.uk
|
|
