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 1987, 1989, 1996, 2000, 2003
NORD is grateful to Charlotte E. Thompson, MD, for assistance with the content of this report.
Synonyms of Hypotonia, Benign Congenital
Disorder Subdivisions
General Discussion
Benign congenital hypotonia (BCH) has been an outdated term since 1956, when the first congenital muscle disease, central core disease, was described. Now specific diagnoses can be made in most patients. As clinicians and researchers have gained greater understanding of neuromuscular diseases, the phrase has been dropped and replaced by names of specific neuromuscular disorders. Symptoms and findings associated with the group of neuromuscular disorders formerly known as benign congenital hypotonia include low muscle tone (hypotonia) at birth or in the first few months and general “floppiness” of muscles. Some of the disorders are non-progressive, which means that they do not increase in severity. Most improve over time but mild weakness persists into adulthood. Some of the disorders do progress in the adult years and may have associated problems.
.
Organizations related to Hypotonia, Benign Congenital
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: ordr@od.nih.gov
Home page: http://rarediseases.info.nih.gov/Default.aspx
- MUMS (Mothers United for Moral Support, Inc) 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/
- March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains NY 10605
Phone #: 914-997-4488
800 #: 888-663-4637
e-mail: Askus@marchofdimes.com
Home page: http://www.marchofdimes.com
- National Institute of Neurological Disorders and Stroke (NINDS)
P.O. Box 5801
Bethesda MD 20824
Phone #: 301-496-5751
800 #: 800-352-9424
e-mail: me20t@nih.gov
Home page: http://www.ninds.nih.gov/
- Pathways Awareness Foundation
150 North Michigan Ave.,Ste.2100
Chicago IL 60601
Phone #: 312-893-6620
800 #: 800-326-8154
e-mail: friends@pathwaysawareness.org
Home page: http://www.pathwaysawareness.org
|
|
