Support

The Congenital Sucrase-Isomaltase Deficiency Support Group is the only international support group supporting and tracking children with CSID.  The support group provides information to doctors, dieticians, and parents or individuals who may need assistance with the disorder. The support group has mentors available to assist parents with newly diagnosed children with CSID and can provide referrals for families who need help.

We assist parents with specific nutritional information for phenotypes A through F, review of treatment options, and provide food composition, menus, and recipies related to the disorder.

When contacting the CSID support group please provide the following information and refer to our HEPA guidelines.

• 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, if you have one.

• Results of small bowel biopsy and what are the normal levels for test given. (There are many labs throughout the world that utilize different measurements and normal levels for enzymes. Knowing your biopsy results assists the support group in correlating your child's biopsy with the dietary phenotypes A-F.)

To contact us:

E-mail:         humanfamilyproject@gmail.com
By Phone:     801-691-0666 MST, USA 8am-8pm

 

Parents may also consider joining any of the following facebook parent support groups for additional information or to contact other parents with children who have CSID. Specific support groups are available for each phenotype A-F:

CSID (for general information and support, all phenotypes and carriers of the disorder)

CSID Mutation A (for parents of phenotype A children)

CSID Mutation B (for parents of phenotype B children)

CSID Mutation C (for parents of phenotype C children)

CSID Mutation D (for parents of phenotype D children from Australia and New Zealand only)

CSID Mutation F (for parents of phenotype F children)

CSIDCARES.org (run by QOL Medical, LLC, the makers of the enzyme Sucraid)

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