| Organization and Website |
Notes |
Alagille Syndrome Alliance
www.alagille.org |
Information on Alagille syndrome, including diagnosis, testing, and treatment; support network for children, their parents, and others |
American Dietetic Association (ADA)
www.eatright.org |
Promotes optimal nutrition, health, and well-being; dietitian finder; daily nutrition tips |
American Hemochromatosis Society Inc. (AHS)
www.americanhs.org |
Variety of information on hemochromatosis (HH), including DNA screening for HH and pediatric HH |
American Liver Foundation (ALF)
www.liverfoundation.org |
Information about liver wellness, liver disease, and prevention of liver disease; audiovisuals, seminars, and training programs; advocacy and research; news and events |
American Porphyria Foundation
www.porphyriafoundation.com |
Informational brochures about porphyria; referrals to porphyria treatment specialists; self-help services for members |
Celiac Disease Foundation (CDF)
www.celiac.org |
Telephone information and referral services, information packets, and special educational seminars and general meetings |
Celiac Sprue Association/USA Inc.
www.csaceliacs.org |
Information sheets, new-patient packet, handbook |
Crohn’s & Colitis Foundation of America (CCFA)
www.ccfa.org |
Information on all aspects of Crohn's disease and ulcerative colitis, including emotional factors and issues specific to women and children |
Cyclic Vomiting Syndrome Association (CVSA)
www.cvsaonline.org |
Promotes and facilitates medical research about nausea and vomiting; increases public and professional awareness; patient education publications |
Food Allergy Network & Anaphylaxis Network
www.foodallergy.org |
Coping strategies for patients; booklets; videos; cookbooks; and special-alert mailings informing members of product information, including ingredient changes, recalls, or packaging mishaps |
Gastro-Intestinal Research Foundation
www.girf.org |
One-page quarterly newsletter on issues in gastrointestinal research and health available by postal mail or online |
Gluten Intolerance Group of North America
www.gluten.net |
Materials on the gluten-free diet (consistent with the American Dietetic Association guidelines); summer camp for children; annual education conference; quarterly newsletter; foreign-language materials; fact sheets; videotapes; counseling and access to gluten-free products; cookbooks and resource books |
Hepatitis B Coalition/Immunization Action Coalition
www.immunize.org |
Publications: NEEDLE TIPS and the Hepatitis B Coalition News and Vaccinate Adults!; email news service (IAC Express); foreign-language brochures and materials for various ethnic populations; print materials for clinic staff; videotapes and posters |
Hepatitis B Foundation
www.hepb.org
www.hepb.org/08-0197.hepb (Chinese chapter)
www.hepb.org/09-0210.hepb (Korean chapter)
www.hepb.org/vietnamese (Vietnamese chapter) |
Updated "Drug Watch" list of compounds under development for chronic HBV; liver specialist directory; printable brochures and newsletters; advice for carriers, adoptive parents, and health care providers; interactive email; general hepatitis B information; new language chapters coming soon |
Hepatitis Foundation International (HFI)
www.hepatitisfoundation.com
www.hepfi.org |
Audiovisual materials for the public; database of hepatitis support groups; telephone support network for patients; foreign-language materials; educational materials (posters, brochures, videos, and books); a workbook about the liver for children |
International Foundation for Functional Gastrointestinal Disease (IFFGD) Inc.
www.iffgd.org |
Information on gastrointestinal motility disorders in infants, children, and adults; publications on functional gastrointestinal disorders |
Intestinal Disease Foundation
www.intestinalfoundation.org |
Information, guidance, and support for people with chronic digestive illnesses |
Iron Overload Diseases Association Inc. (IOD)
www.ironoverload.org |
Counseling for patients with hemochromatosis and their families; physician referrals; educational materials including a booklet, newsletter, and an information brochure |
National Association for Continence (NAFC)
www.nafc.org |
Information on incontinence, including books and audiovisuals |
National Organization for Rare Disorders (NORD)
www.rarediseases.org |
Helps people with rare "orphan" diseases and the organizations that serve them; NORD Resource Guide; Physicians Guide for Rare Disorders |
Oley Foundation for Home Parenteral and Enteral Nutrition (HomePEN)
www.oley.org |
Educational materials on home parenteral and enteral nutrition, including a nutrition complication chart and nutrition choices video; family network; toll-free consumer networking; video library of annual conference presentations |
Pediatric/Adolescent Gastroesophageal Reflux Association Inc. (PAGER)
www.reflux.org |
Literature on pediatric gastroesophageal reflux disease (GERD) and related disorders; support for patients, their families, and the public; hereditary GERD study |
Pediatric Crohn's & Colitis Association Inc.
pcca.hypermart.net |
Information on medical, nutritional, psychological, and social factors in pediatric and adolescent Crohn's disease and ulcerative colitis |
Pull-Thru Network
www.pullthrough.org |
Information and support to the families of children born with anorectal malformations and related disorders. Quarterly newsletter, email and phone support, member networking. A chapter of the United Ostomy Association |
Reach Out for Youth With Ileitis and Colitis Inc.
www.reachoutforyouth.org |
Educational and emotional support for patients and their families; educational seminars and quarterly newsletters; hotline |
Simon Foundation for Continence
www.simonfoundation.org |
Assistance and support for those with urinary incontinence; educational materials including a book on managing incontinence |
TEF-VATER International
www.tefvater.org |
Information and support for families of children who have esophageal atresia, tracheoesophageal fistula, and the VATER association. VATER is a group of birth defects that affect the spine and blood vessels; the anus and rectum; trachea; esophagus; kidneys, ureters, and bladder; radial arm defects; and many other defects |
United Ostomy Association Inc.
www.uoa.org |
Volunteer-based association providing education, information, support, and advocacy for people facing intestinal or urinary diversions |
Weight-Control Information Network (WIN)
www.niddk.nih.gov |
Science-based health information materials on weight control, obesity, physical activity, and related nutritional issues |
Wilson's Disease Association
www.wilsonsdisease.org |
Communications and support network for individuals affected by Wilson disease; patient information; referrals; meetings |
NIH Publication No. 03–4552
March 2003
