Parent Support Group
NORD Registered and Reviewed
Frequently Asked Questions
Sucrose & Starch in Foods
Sucrose Free Drugs
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.
To contact us:
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)
NORD (National Organization for Rare Disorders, Inc. can be found at http://www.nord-rdb.com/~orphan
Fragile X Foundation (Genetic Diseases only)
Alliance of Genetic Support Groups
Digestive Disease National Coalition
© CSIDINFO.Com Parent Support Group (1994-2014)