Hirschsprung's Disease

Other Places To Get Help

Organizations

March of Dimes
1275 Mamaroneck Avenue
White Plains, NY  10605
Phone:	(914) 997-4488
Web Address:	www.marchofdimes.com
The March of Dimes tries to improve the health of babies by preventing birth defects, premature birth, and early death. March of Dimes supports research, community services, education, and advocacy to save babies' lives. The organization's Web site has information on premature birth, birth defects, birth defects testing, pregnancy, and prenatal care. You can sign up to get a free newsletter and also explore Understanding Your Newborn: An Interactive Program for New Parents.
MUMS: National Parent-to-Parent Network
150 Custer Court
Green Bay, WI  54301-1243
Phone:	1-877-336-5333 (parents only) toll-free (920) 336-5333
Fax:	(920) 339-0995
E-mail:	mums@netnet.net
Web Address:	www.netnet.net/mums
MUMS is a national parent-to-parent organization for parents or caregivers of a child with any disability, rare or common disorder, chromosomal abnormality, or health condition. The organization's main purpose is to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or a similar condition.
National Digestive Diseases Information Clearinghouse (NDDIC)
2 Information Way
Bethesda, MD  20892-3570
Phone:	1-800-891-5389
Fax:	(703) 738-4929
E-mail:	nddic@info.niddk.nih.gov
Web Address:	www.digestive.niddk.nih.gov
This clearinghouse is a service of the U.S. National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the U.S. National Institutes of Health. The clearinghouse answers questions; develops, reviews, and sends out publications; and coordinates information resources about digestive diseases. Publications produced by the clearinghouse are reviewed carefully for scientific accuracy, content, and readability.
National Organization for Rare Disorders (NORD)
55 Kenosia Avenue, P.O. Box 1968
Danbury, CT  06813-1968
Phone:	(203) 744-0100 1-800-999-NORD (1-800-999-6673)
Fax:	(203) 798-2291
TDD:	(203) 797-9590
E-mail:	orphan@rarediseases.org RN@rarediseases.org
Web Address:	www.rarediseases.org
This organization provides fact sheets, names of related organizations, and sources for other materials relating to rare disorders.
North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN)
P.O. Box 6
Flourtown, PA  19031
Phone:	(215) 233-0808
Fax:	(215) 233-3918
E-mail:	naspghan@naspghan.org
Web Address:	www.naspghan.org
NASPGHAN promotes advances in clinical care, research, and education for infants, children, and teens with digestive disorders. The family resources page of this Web site has information about pain in the belly, diarrhea, constipation, vomiting, poor weight gain, nutritional problems, and diseases of the liver, bowel, and pancreas.

Support Group

Hirschsprung's and Motility Disorders Support Network (HMDSN)
Phone:	+44 (0)7973674120
E-mail:	info@hirschsprungs.info
Web Address:	http://www.hirschsprungs.info/index.html
The Hirschsprung's and Motility Disorders Support Network (HMDSN) is a support group comprised of parents, caregivers, and families of children with Hirschsprung's Disease and other gastrointestinal motility disorders. This group of disorders occur when nerves or muscles in any portion of the digestive tract do not function correctly and result in constipation, abdominal distention, reflux, nausea, vomiting, and diarrhea. The most common disorders HMDSN encounters are Hirschsprung's Disease (HD), Intestinal Neuronal Dysplasia (IND or NID) and Intestinal Pseudo-Obstruction (CIP). Although experiences are shared, including medical procedures, this group does not intend to provide medical advice.

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Author:	Amy Fackler, MA Debby Golonka, MPH	Last Updated: October 16, 2006
Medical Review:	Michael J. Sexton, MD - Pediatrics Paul E. Hyman, MD - Pediatric Gastroenterology
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