Support

The Congenital Sucrase-Isomaltase Deficiency Support Group is the only international support group tracking children with CSID.  We supply research and information to doctors, dieticians, and parents or individuals who may need assistance understanding this disorder.  Help ranges from simple things like menus for school lunches to current research; support when things are overwhelming or your child is first diagnosed. we also provide specific nutritional information for groups A-E, guidelines for introducing Sucraid and starch into diets.  

Before contacting us we require the following information:

• Name, age and gender of child

• Legal guardian's name, address, and telephone number

• Physician, Name, address and telephone number

• Dietician, Name, address and telephone number

• Results of small bowel biopsy and what are the normal levels for test given

• Group you believe best matches patient's symptoms and foods and fluids you are currently allowing child to consume.

To contact us:

E-mail            deansl@msn.com   

Other Web sites and organizations that may be of assistance

NORD (National Organization for Rare Disorders, Inc. can be found at http://www.nord-rdb.com/~orphan
e-mail: orphan@nord-rdb.com
P.O. Box 8923
New Fairfield, CT 06812-8923
Telephone (203) 746-6518
Toll free: (800) 999-6673
TDD:(203) 746-6927

Fragile X Foundation (Genetic Diseases only)
P.O. Box 300233
Denver, Colorado 80203
1-800-835-2246 ext. 58

Alliance of Genetic Support Groups
35 Wisconsin Circle, Suite 440
Chevy Chase, MD 20015
800-336-GENE or 301-652-5553
http://mednlp.netusa.net/www/agsg.htm

Digestive Disease National Coalition
507 Capitol Court NE, Suite 200
Washington, DC 20002
202-544-7497

International Foundation for Bowel Dysfunction
P.O. Box 17864
Milwaukee, WI 53217
414-964-1799

Intestinal Disease Foundation
1323 Forbes Avenue, Suite 200
Pittsburgh, PA  15219
412-261-5888

National Digestive Diseases Information Clearinghouse
2 Information Way
Bethesda, MD 20892-3570
301-654-3810