Directory of Digestive Diseases Organizations for Patients
This directory lists voluntary and private organizations involved in digestive diseases-related activities for patients. The organizations offer educational materials and other services.
Alagille Syndrome Alliance
Mission:To provide a support network for children, their parents, and others with Alagille syndrome.
Materials: Newsletter — LiverLink.
American Celiac Society — Dietary Support Coalition
59 Crystal Avenue
West Orange, NJ 07052
Phone: (973) 325-8837
Fax: (973) 669-8808
Mission: To provide practical assistance to members and individuals with celiac disease and information about the disease to the public.
Materials: Newsletter — Whooo's Report.
American Dietetic Association (ADA)
216 West Jackson Boulevard
Chicago, IL 60606-6995
Phone: (312) 899-0040
Fax: (312) 899-4899
Mission: To serve the public through the promotion of optimal nutrition, health, and well-being.
Materials: Monthly professional journal — The Journal of the American Dietetic Association; monthly newsletter — ADA Courier; books and other resources for consumers and professionals.
American Hemochromatosis Society Inc. (AHS)
Mission: To educate the public, the medical community, and the media by distributing the most current information available on hereditary hemochromatosis (HH), including DNA screening for HH and pediatric HH; facilitate patient empowerment through an online network.
American Liver Foundation (ALF)
75 Maiden Lane, Suite 603
New York, NY 10038-4810
Phone: 1-800-465-4837 or 1-888-443-7222
or (212) 668-1000 or 1-800-676-9340
24-hour helpline (7 days/week): 1-800-465-4837 or 1-888-443-7222
Fax: (973) 256-3214 or (212) 483-8179
Mission: To promote awareness and support research on liver disease; disseminate information about liver wellness, liver disease, and prevention of liver disease with audiovisual and printed materials, seminars, and training programs; promote organ donation; encourage vaccination against hepatitis B; serve as trustee of transplant funds; offer support groups through local chapters.
Materials: Member newsletter — Progress; pamphlets, fact sheets, and videos about liver diseases, transplantation, organ donation, and prevention of liver diseases.
American Porphyria Foundation
Mission: To advance awareness, research, and treatment of the porphyrias; provide self-help services for members; provide referrals to porphyria treatment specialists.
Materials: Informational brochures — Common Questions About Porphyria, Acute Intermittent Porphyria, Drugs and Porphyria, Porphyria Cutanea Tarda (PCT), Diet and Nutrition in Porphyria, Hematin, and Erythropoietic Protoporphyria (EPP); newsletter.
Association of Gastrointestinal Motility Disorders Inc. (AGMD)
(formerly American Society of Adults with Pseudo-Obstruction Inc.)
Mission: To serve as an integral educational resource on digestive motility disorders and function as an information base for members of the medical community. Formerly known as the American Society of Adults with Pseudo-Obstruction, Inc. (ASAP), this nonprofit international organization changed its name and broadened its mission in 1999.
Materials: Member publications — AGMD Beacon and AGMD Search and Research; physician listings and referrals; medical references; educational materials; publication listings and order form; patient information.
Celiac Disease Foundation (CDF)
Mission: To develop awareness and improve the quality of medical and self-care for celiac disease/dermatitis herpetiformis; provide telephone information and referral services, free information, medical advisory board, and special educational seminars and general meetings. Annual dues: $35.
Materials: Quarterly newsletter — Guidelines for a Gluten-Free Lifestyle; brochures.
Celiac Sprue Association/USA Inc.
P.O. Box 31700
Omaha, NE 68131-0700
Phone: (402) 558-0600
Fax: (402) 558-1347
Mission: To provide information and educational materials for persons with celiac sprue and dermatitis herpetiformis and for parents of children with celiac disease. Made up of six regions with chapters and resource units across the United States.
Materials: Information sheets — Celiac Sprue, Basics for the Gluten-free Diet, Gluten-free Commercial Products; new-patient packet; handbook — On the Celiac Condition; quarterly newsletter for people with celiac disease — Lifeline; membership forms; chapter information; resource unit information; promotional brochure.
Crohn's & Colitis Foundation of America Inc. (CCFA)
Mission: To support basic and clinical research on a cure and treatment for Crohn's disease and ulcerative colitis; conduct professional education activities; produce public service programs and a wide variety of literature about inflammatory bowel disease for patients, medical professionals, and the general public.
Materials: Patient education and instructional materials about all aspects of Crohn's disease and ulcerative colitis, including emotional factors and issues specific to women and children; resource guides; three full-length books; a magazine for foundation supporters — Foundation Focus; extensive website at www.ccfa.org.
Cyclic Vomiting Syndrome Association (CVSA)
Mission: To provide opportunities for patients, families, and professionals to offer and receive support and share knowledge about cyclic vomiting syndrome; actively promote and facilitate medical research about nausea and vomiting; increase worldwide public and professional awareness; serve as a resource center for information.
Materials: Member newsletter — Code V; patient education publications.
Digestive Disease National Coalition
507 Capitol Court NE., Suite 200
Washington, DC 20002
Phone: (202) 544-7497
Fax: (202) 546-7105
Mission: To inform the public and the health care community about digestive diseases; seek Federal funding for research, education, and training; represent members' interests regarding Federal and State legislation that affects digestive diseases research, health care, and education.
Materials: Brochures; patient education materials.
The Food Allergy & Anaphylaxis Network
Mission: To increase public awareness about food allergies and anaphylaxis, advance research, and provide education, emotional support, and coping strategies to patients; serve as the communication link between the food industry, the Government, the airline industry, and the food-allergic consumer.
Materials: Bimonthly member newsletter — Food Allergy News; booklets; videos; cookbooks; and special-alert mailings informing members of product information, including ingredient changes, recalls, or packaging mishaps.
Gastro-Intestinal Research Foundation
Mission: To support research and training programs at the University of Chicago Medical Center, Section of Gastroenterology, and sponsor educational activities for the public.
Materials: Newsletter — Inflammatory Bowel Disease; patient education pamphlet — Issues in Women's Gastrointestinal Health.
Gluten Intolerance Group of North America (GIG)
Mission: To provide education and support to persons with celiac disease and dermatitis herpetiformis, health care professionals, and the general public.
Materials: Cookbooks and general dietary recommendations; fact sheets; member newsletter — GIG Newsletter; videotapes; patient packets for celiac disease and dermatitis herpetiformis; dietary guidelines for hospitalized persons with celiac sprue and dermatitis herpetiformis.
The Hemochromatosis Foundation Inc.
P.O. Box 8569
Albany, NY 12208
Phone: (518) 489-0972
Fax: (518) 489-0227
Mission: To provide information to the public, families, and professionals about hereditary hemochromatosis (HH); conduct and raise funds for research; encourage early screening for HH; hold symposiums and meetings; offer screening information for families and the public, as well as genetic counseling and support for patients, families, and professionals.
Materials: Free informational booklets for the public, families, and professionals; 2 3/4 hr. Family Teaching Conference audiovisual tape at $35 (up-to-date).
Hepatitis B Coalition/Immunization Action Coalition
Mission: To promote hepatitis B vaccination for all children from birth to 18 years of age, HBsAg screening for all pregnant women, testing and vaccination for high-risk groups, and education and treatment for people who are chronically infected with hepatitis B. The Hepatitis B Coalition is a program of the Immunization Action Coalition. The coalition works to increase immunization rates and prevent disease and promotes physician, community, and family awareness of and responsibility for appropriate immunization of people of all ages against all vaccine-preventable diseases.
Materials: Semi-annual publications — NEEDLE TIPS and the Hepatitis B Coalition News and Vaccinate Adults!; a free email news service — IAC Express; other materials — brochures for patients in a number of languages, print materials for clinic staff, videotapes, posters, materials for various ethnic populations.
Hepatitis B Foundation
Mission: The Hepatitis B Foundation is a nationally recognized, voluntary nonprofit organization dedicated to the cause and cure of hepatitis B. We are committed to raising public awareness, promoting prevention, providing information and support, and funding focused cure research.
Materials: Newsletter — B-Informed; brochures — The Hepatitis B Foundation Cause for a Cure, Someone You Know Has Hepatitis B, Protect Yourself and Those You Love Against HBV, What Hepatitis B Carriers Should Know, and The First Loving Act — Vaccination; fact sheets — Advice to Parents of Children With HBV and Hot Sheet with current hepatitis B virus research, telephone numbers, and a medical glossary; directory — National Directory of Liver Specialists; video — Someone You Know.
Hepatitis Foundation International (HFI)
Mission: To provide education, training programs, and materials for the public, patients, educators, and medical professionals about the diagnosis, treatment, and prevention of viral hepatitis; support research to find cures; provide a telephone support network for patients, a toll-free hotline in the United States and Canada, a database of hepatitis support groups, and a website with information in multiple languages.
Materials: Information sheets — Caring for Your Liver; Diagnosis and Treatment; Hepatitis A, B, and C; Hepatitis A and B Vaccination; Caution! Treating Children With Acetaminophen; Health Insurance; Helpful Tips for Carriers of HBV; Living With Hepatitis C — Self-Help Tips; Tips on Coping With Chronic Hepatitis; additional educational materials; poster — Take Care of Your Liver; brochure — Is Your Liver Giving You the Silent Treatment?; primers for teachers and parents; workbook about the liver for children; videos and books; newsletter — Hepatitis Alert.
International Foundation for Functional Gastrointestinal Disorders (IFFGD), Inc.
Mission: To provide support and educational information for people with functional gastrointestinal disorders, including irritable bowel syndrome (IBS), constipation, diarrhea, pain, and incontinence.
Materials: Quarterly newsletters — Participate, Digestive Health Matters, and Digestive Health in Children; educational pamphlets; fact sheets.
International Foundation for Functional Gastrointestinal Disorder (IFFGD), Inc. Pediatric
Mission: To promote public awareness of gastrointestinal motility disorders, in particular intestinal pseudo-obstruction and Hirschsprung's disease; provide education and support to individuals and families of children who have been diagnosed with these disorders through parent-to-parent contact, publications, and educational symposia; encourage and support medical research in the area of gastrointestinal motility disorders.
Materials: Member newsletter — APHS Newsletter; informational brochures about intestinal pseudo-obstruction and Hirschsprung's disease, and gastroesophageal reflux in children.
Intestinal Disease Foundation
Landmarks Building, Suite 525
One Station Square
Pittsburgh, PA 15219
Phone: 1-877-587-9606 or (412) 261-5888
Fax: (412) 471-2722
Mission: To improve the quality of life of adults and children affected by chronic digestive illness through information, guidance, and support.
Materials: Member newsletter — Intestinal Fortitude; brochures; books.
Iron Overload Diseases Association Inc.
Mission: To conduct professional education symposiums and exhibits at medical meetings; serve and counsel patients with hemochromatosis and their families; offer doctor referrals; promote patient advocacy concerning insurance, Medicare, blood banks, and the Food and Drug Administration; encourage research; maintain an international clearinghouse; offer public information through the media; develop chapters and self-help groups; sponsor annual symposiums and annual IOD Awareness Week.
Materials: Booklet — Overload: An Ironic Disease; bimonthly newsletter — Ironic Blood; information brochure — Iron Overload Alert; fact sheet.
National Association For Continence (NAFC)
(formerly Help for Incontinent People [HIP])
P.O. Box 8306
Spartanburg, SC 29305-8306
Phone: 1-800-BLADDER or (864) 579-7900
Fax: (864) 579-7902
Mission: To serve as a leading source of education, advocacy, and support to the public and to the health profession about the causes, prevention, diagnosis, treatments, and management alternatives for incontinence.
Materials: Quarterly newsletter — Quality Care; Annual Resource Guide of Continence Products and Services; other educational materials, including books and audiovisuals.
National Center for Nutrition and Dietetics (NCND) of the American Dietetic Association
Mission: To provide consumers with direct and immediate access to reliable nutrition information.
Call 1-800-366-1655 to listen to recorded nutrition messages in English or Spanish or to receive a referral to a registered dietitian in your area.
National Organization for Rare Disorders Inc. (NORD)
Mission: A unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them; committed to the identification, treatment, and cure of rare disorders through education, advocacy, research, and service programs.
Materials: Member newsletter — Orphan Disease Update (ODU); NORD Resource Guide; Physicians Guide for Rare Disorders.
Oley Foundation for Home Parenteral and Enteral Nutrition (HomePEN)
214 Hun Memorial, MC-28
Albany Medical Center
Albany, NY 12208-3478
Phone: 1-800-776-OLEY (6593) or (518) 262-5079 (outside U.S.)
Fax: (518) 262-5528
Mission: To enrich the lives of those requiring home nutrition support.
Materials: Bi-monthly newsletter — LifelineLetter; charts — Home Parenteral Nutrition Complication Chart and Home Enteral Nutrition (HEN) Complication Chart; video library of annual conference presentations; video — Choices in Nutrition: Understanding HPN Therapy Options; HomePEN Family Network; toll-free consumer networking.
Pediatric/Adolescent Gastroesophageal Reflux Association Inc. (PAGER)
Mission: To gather and disseminate information on pediatric gastroesophageal reflux and related disorders; provide support and education to patients, their families, and the public; promote the general welfare of patients with gastroesophageal reflux and their families; promote public awareness of the condition as well as promote research into the causes, treatments, and eventual cure for reflux. Provide trained, experienced volunteer speakers and parent-to-parent sharing via meetings and electronic message boards.
Materials: Literature on gastroesophageal reflux and related disorders with descriptions of tests, procedures, medications, and parent-tested home care techniques; quarterly newsletter; brochure on breast-feeding a baby with reflux; reprint from JAMA — Mapping a Gene for Severe Pediatric GER to Chromosome 13q14.
Pediatric Crohn's & Colitis Association Inc. (PCCA)
P.O. Box 188
Newton, MA 02468
Phone: (617) 489-5854
Mission: To focus on all aspects of pediatric and adolescent Crohn's disease and ulcerative colitis, including medical, nutritional, psychological, and social factors; provide information sharing, educational forums, newsletters, a hospital outreach program, and support for research.
Materials: Information pamphlets — The ABC's of Pediatric Inflammatory Bowel Disease and Crohn's Disease, Ulcerative Colitis, and School; PCCA newsletter; videos; membership forms; information folder.
Mission: To provide emotional support and information to patients and families of children who have had or will have pull-through surgery to correct an imperforate anus or associated malformation, Hirschsprung's disease, or other fecal incontinence problems; sponsor online discussion groups and regional meetings. A chapter of the United Ostomy Association.
Materials: Quarterly publication — Pull-thru Network News; free brochure — Anorectal Malformations — A Parent's Guide.
Reach Out for Youth with Ileitis and Colitis Inc.
Mission: To provide educational seminars and individual and group support to patients and their families; raise funds to support the center's programs and clinical and laboratory research and to purchase of state-of-the-art equipment.
Materials: Newsletter — The Inner Circle; educational brochure — The Inside Story.
The Simon Foundation for Continence
P.O. Box 815
Wilmette, IL 60091
Phone: 1-800-23-SIMON or (847) 864-3913
Fax: (847) 864-9758
Mission: To bring the topic of incontinence out of the closet and remove the associated stigma; provide educational materials to patients, their families, and the health care professionals who provide patient care.
Materials: Quarterly newsletter — The Informer; hardbound 122-page book — Managing Incontinence: A Guide to Living With Loss of Bladder Control; additional patient education materials.
Mission: To provide support to children and adults born with esophageal atresia (EA), tracheoesophageal fistula (TEF), or VACTERL (V — vertebral, A — anal, C — cardial, TE — tracheo-esophageal, R — renal, L — limb).
Materials: Newsletter — Inside Connections; general information.
United Ostomy Association Inc. (UOA)
Mission: To produce and distribute materials about ostomy care and management; through trained UOA members, offer practical assistance and emotional support to ostomy patients; sponsor annual youth rally and State and regional conferences for local affiliates. UOA has 500 chapters to serve people locally.
Materials: Journal — Ostomy Quarterly; patient education pamphlets; self-care handbooks; audiovisual program.
Weight-control Information Network (WIN)
Mission: To produce and disseminate up-to-date, science-based materials on weight control, obesity, physical activity, and related nutritional issues; develop communication and promotional strategies that encourage individuals to engage in regular physical activity and eat healthy foods.
Materials: Fact sheets, pamphlets, reprints, consensus statements, reports, and literature searches on weight control, obesity, and weight-related nutritional disorders; quarterly newsletter — WIN Notes.
Wilson's Disease Association
Mission: To serve as a communications and support network for individuals affected by Wilson's disease; distribute information to professionals and the public; make referrals; hold meetings.
Materials: Fact sheets about Wilson's disease; member newsletter.
National Digestive Diseases Information Clearinghouse
2 Information Way
Bethesda, MD 20892-3570
The National Digestive Diseases Information Clearinghouse (NDDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health under the U.S. Department of Health and Human Services. Established in 1980, the clearinghouse provides information about digestive diseases to people with digestive disorders and to their families, health care professionals, and the public. NDDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about digestive diseases.
Publications produced by the clearinghouse are carefully reviewed by both NIDDK scientists and outside experts.
This e-text is not copyrighted. The clearinghouse encourages users of this e-pub to duplicate and distribute as many copies as desired.