IBD Links

Crohn's and Colitis Foundation of America. General information as well as a listing of local events, support groups and chapters for people with IBD. This site also has parent and child guides on living with IBD, informational brochures and an excellent list of recommended books. www.ccfa.org

The CCFA website also contains an excellent series of webcasts devoted to the effects of IBD on kids and families, which can be accessed directly at http://www.ccfa.org/about/edprograms#

North American Society for Pediatric Gastroenterology,Hepatology and Nutrition. Informational pamphlets for families, online book chapters and an interactive page for children teaching them about the digestive system with pictures and text. NASPGHAN also offers a personal IBD notebook through its site, which contains important information for families and is helpful for storing information about a child’s disease. www.naspgn.org

Helping Your Child With Medical Experiences - A Practical Parent Guide. Advice on preparing your child for a medical procedure or hospitalization, and on coping with your child’s procedure or hospitalization. PDF

Center for Families at Children’s Hospital Boston. A group dedicated to helping families find the information and resources they need to understand their child’s medical condition and take part in his or her care. http://www.childrenshospital.org/patientsfamilies/Site1393/mainpageS1393P4sublevel43.html

Family Village. A global community integrating information, resources, and communication opportunities for the chronically ill and their families. www.familyvillage.wisc.edu

MUMS National Parent to Parent Network. A national Parent-to-Parent organization that provides 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. www.netnet.net/mums

“Straight from the Gut.” A Patient-Centered Guide that covers inflammatory bowel diseases, state-of-the-art treatments, managing symptoms, and coping with family, employment, and insurance challenges. Includes stories and advice from over 40 teens and adults with IBD and their families. Available for purchase at http://www.wellnessbooks.com/

“Learning Sickness: A Year with Crohn’s Disease.” A personal narrative about learning how to live with a chronic illness. The author talks about how Crohn’s Disease affected his life and perspective, and how he copes with the condition. Available through http://www.wellnessbooks.com/

The Creative Colitis Cookbook. A collection of 100 low-fiber, non-dairy recipes. www.colitiscookbook.com

HealingWell.com. A large collection of articles, webcasts and other resources about Crohn’s disease. This site also has online forums on various health conditions. www.healingwell.com/ibd

KidsHealth.org KidsHealth is a large website providing doctor-approved health information about children and adolescents. The site has separate areas for kids, teens, and parents, and presents information about IBD and other illnesses to each group in an accessible format. http://kidshealth.org/parent/medical/digestive/ibd.html

WebMD/About.com - Both good sources of factual information about a variety of topics related to IBD. www.webmd.com / www.about.com

NIH - The National Digestive Disease Information Clearinghouse - Factual information on the causes, symptoms, diagnosis and treatment of Crohn’s disease and ulcerative colitis. http://digestive.niddk.nih.gov/ddiseases/pubs/crohns/
http://digestive.niddk.nih.gov/ddiseases/pubs/colitis/

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