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, 1992, 2003, 2009
NORD is very grateful to Marco Castori, MD, Department of Medical Genetics, San Camillo-Forlanini Hospital, Rome, Italy, for assistance in the preparation of this report.
Synonyms of VACTERL Association
- VACTERLS association
- VATER association
- VATERS association
Disorder Subdivisions
General Discussion VACTERL association is a nonrandom association of birth defects that affects multiple organ systems. The term VACTERL is an acronym with each letter representing the first letter of one of the more common findings seen in affected children:
(V) = vertebral abnormalities (A) = anal atresia (C) = cardiac (heart) defects (T) = tracheal anomalies including tracheoesophageal fistula (E) = esophageal atresia (R) = renal (kidney) and radial abnormalities (L) = (other) limb abnormalities
In addition, to the above mentioned features, affected children may also exhibit less frequent abnormalities including growth deficiencies and failure to gain weight and grow at the expected rate (failure to thrive). Further low-frequency findings include facial asymmetry (hemifacial microsomia), external ear malformations, lung lobation defects, intestinal malrotation and genital anomalies. VATER/VACTERL features are more common in twinning. In some cases, the acronym VATER association is used. Some researchers have added an (S) to the VACTERL or VATER acronym to represent a single umbilical artery instead of the normal two. Mental functioning and intelligence is usually unaffected; developmental delay/mental retardation should suggest an alternative diagnosis. The exact cause of VACTERL association is unknown. Most cases occur randomly, for no apparent reason (sporadic).
Organizations related to VACTERL Association
- Birth Defect Research for Children
930 Woodcock Rd
Suite 225 Orlando FL 32803
Phone #: 407-895-0802
800 #: --
e-mail: staff@birthdefects.org
Home page: http://www.birthdefects.org
- Congenital Heart Anomalies, Support, Education, & Resources
2112 North Wilkins Road
Swanton OH 43558
Phone #: 419-825-5575
800 #: --
e-mail: chaser@compuserve.com
Home page: http://www.csun.edu/~hcmth011/chaser/chaser-news.html
- EA/TEF Child and Family Support Connection, Inc.
111 West Jackson Boulevard
Suite 1145 Chicago IL 60604-3502
Phone #: 312-987-9085
800 #: --
e-mail: info@eatef.org
Home page: http://www.eatef.org
- Fetal Hope Foundation
9786 S Holland Street
Littelton CO 80127
Phone #: 303-932-0553
800 #: 877-789-4673
e-mail: info@fetalhope.org
Home page: http://www.fetalhope.org
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-519-3194
800 #: 888-205-2311
e-mail: gardinfo@nih.gov
Home page: http://www.genome.gov/10000409
- 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 #: 914-428-7100
800 #: 888-663-4637
e-mail: Askus@marchofdimes.com
Home page: http://www.marchofdimes.com
- TEF/VATER/VACTRL National Support Network
15301 Grey Fox Road
Upper Marlboro MD 20772
Phone #: 301-952-6837
800 #: --
e-mail: tefvater@ix.netcom.com
Home page: http://www.tefvater.org
- Tracheo Oesophageal Fistula Support Group (TOFS)
St. George's Centre
91 Victory Road Netherfield Nottingham Intl NG4 2NN
Phone #: 011-5 9-61 3092
800 #: --
e-mail: office@tofs.org.uk
Home page: http://www.tofs.org.uk
- VATER Connection, Inc.
1722 Yucca Lane
Emporia KS 66801
Phone #: 620-342-6954
800 #: --
e-mail: angie@vaterconnection.org
Home page: http://www.vaterconnection.org
|
|