LINKS and SUPPORT

Digestive diseases affect an estimated 60 million Americans. These diseases and their associated long-term complications have catastrophic social and economic consequences. They are responsible for approximately 13 percent of all admissions to hospitals in the United States and about 200,000 deaths each year. Digestive diseases cost the nation more than $60 billion annually, of which $45 billion are direct medical costs such as hospitalizations and medications.
(Source: National Institute of Diabetes and Digestive and Kidney Diseases)

::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

DIRECTORY OF DIGESTIVE DISEASES: (Published by the National Digestive Diseases Information Clearing House). This directory lists voluntary and private organizations involved in digestive-diseases-related activities for patients. The organizations offer educational materials and other services.
Organizations for Patients
Organization		Mission
Alagille Syndrome Alliance 10630 S.W. Garden Park Place Tigard, OR 97223 (503) 639-6217 alagille.org Provides a support network for children, their parents, and others with Alagille syndrome. American Celiac Society - Dietary Support Coalition 59 Crystal Avenue West Orange, NJ 07052 (973) 325-8837 celiac.com Provides practical assistance to members and individuals with Celiac disease and information about the disease to the public. American College of Gastroenterology P.O. Box 3099 Alexandria, VA 22302 acg.gi.org ACG was formed in 1932 to advance the scientific study and medical treatment of disorders of the gastrointestinal tract. The College promotes the highest standards in medical education and is guided by its commitment to meeting the needs of clinical gastroenterology practitioners. American Dietetic Association 120 South Riverside Plaza, #2000 Chicago, Illinois 60606-6995 (800) 877-1600 With nearly 70,000 members, the American Dietetic Association is the nation’s largest organization of food and nutrition professionals. ADA serves the public by promoting optimal nutrition, health and well-being. American Gastroenterological Association (AGA) 4930 Del Ray Avenue Bethesda, MD 20814 (301) 654-2055 The AGA is dedicated to the mission of advancing the science and practice of gastroenterology. Founded in 1897, the American Gastroenterological Association is the oldest medical specialty society in the United States. The AGA's 14,000 members include physicians and scientists who research, diagnose and treat disorders of the gastrointestinal tract and liver. American Hemochromotosis Society, Inc. (AHS) 777 East Atlantic Avenue, #Z-363 Delray Beach, FL 33483-5352 (561) 266-9037 americanhs.org Educates and supports the victims of HFE-associated hereditary hemochromatosis (genetic iron overload) and their families, as well as educates the medical community on the latest research on Hereditary Hemochromatosis (HH). AHS' aim is to identify through genetic testing the over 43 million Americans who unknowingly carry the single or double gene mutations for HH, which puts them at risk for loading excess iron. American Liver Foundation (ALF) 75 Maiden Lane, #603 New York, NY 10038 (800) 465-4837 liverfoundation.org Promotes awareness and supports research on liver disease; disseminates information about liver wellness, liver disease, and prevention of liver disease with audiovisual and printed materials, seminars, and training programs; promotes organ donation; encourages vaccination against hepatitis B; serves as trustee of transplant funds; and offers support through local chapters. American Porphyria Foundation P.O. Box 22712 Houston, TX 77227 (713) 266-9617 porphyriafoundation.com Advances awareness, research, and treatment of the porphyrias; provides self-help services for members; and provides referrals to porphyria treatment specialists. American Pseudo-Obstruction and Hirschsprung's Disease Society Inc. (APHS) 158 Pleasant Street North Andover, MA 01845 (978) 685-4477 Promotes public awareness of gastrointestinal motility disorders, in particular intestinal pseudo-obstruction and Hirschsprung's disease; provides education and support to individuals and families of children who have been diagnosed with these disorders through person-to-person contact, publications, and educational symposia; and encourages and supports medical research in the area of gastrointestinal motility disorders. Association of Gastrointestinal Motility Disorders, Inc. (AGMD) (formerly the American Society of Adults with Pseudo- Obstruction, Inc. ) 11 North Street Lexington, MA 02420 U.S.A (781) 861-3874 agmd-gimotility.org Educates the general public and medical community about chronic intestinal pseudo-obstruction (CIP) and other related digestive motility disorders; serves as an integral resource of information for patients of all ages with CIP and related digestive motility disorders, their families, and members of the medical community; provides support and networking for members of ASAP and family members, including a special young adult network; supplies information concerning social security disability, doctor-patient relationships, coping with a rare disease, living as a caregiver of a person suffering from CIP and other related digestive motility disorders; also provides literature on other patient concerns. ASAP maintains a continually updated reference library of pertinent articles from recognized international medical journals that is available to its members. The organization has a prestigious Medical Advisory Board consisting of prominent physicians in the field of gastroenterology and a certified nutrition consultant. The international organization offers both general membership (including infants, children, teenagers, adults, families, and friends) and professional enrollment available to physicians, nurses, scientists, researchers, and other members of the medical community. Celiac Disease Foundation (CDF) 13251 Ventura Blvd , #1 Studio City, CA 91604-1838 (818) 990-2354 celiac.org Provides services and support to people with celiac disease and dermatitis herpetiformis, through programs of awareness, education, advocacy, and research; telephone information and referral services; medical advisory board; and special educational seminars and quarterly meetings. Celiac Sprue Association/USA Inc. PO Box 31700 Omaha, NE 68131-0700 (877) 272-4272 csaceliacs.org Provides information and referral services for persons with celiac sprue and dermatitis herpetiformis and parents of celiac children. Made up of six regions in the United States with 42 chapters and 78 resource units. Crohn's and Colitis Foundation of America Inc. 386 Park Avenue South, 17th Floor New York, NY 10016-8804 (800) 932-2423 ccfa.org Supports basic and clinical research on a cure and treatment for Crohn's disease and ulcerative colitis; conducts professional education activities; produces public service programs and a wide variety of literature about inflammatory bowel disease for patients and their families, professionals, and the public; and sponsors 70 chapters and affiliates. Cyclic Vomiting Syndrome Assoc.-USA/Canada(CVSA) 3585 Cedar Hill Rd. N.W. Canal Winchester, OH 43110 (614) 837-2586 cvsaonline.org An organization for patients, families and professionals providing support and education for Cyclic Vomiting Syndrome and research support for nausea, vomiting and abdominal migraine. Digestive Disease National Coalition (DDNC) 507 Capitol Court NE, #200 Washington, DC 20002 (202) 544-7497 ddnc.org Informs the public and the health care community about digestive diseases; seeks Federal funding for research, education, and training; and represents members' interests regarding Federal and State legislation that affects digestive diseases research, health care, and education. Food Allergy and Anaphylaxis Network 11781 Lee Jackson Hwy., # 160 Fairfax, VA 22033-3309 800-929-4040 Increases public awareness about food allergies and anaphylaxis and helps families living with food allergies. Provides education, emotional support, and coping strategies to patients, and serves as the communication link between the food industry, the Government, the airline industry, and the food-allergic consumer. Gastro-Intestinal Research Foundation 70 East Lake Street, #1015 Chicago, IL 60601-5907 (312) 332-1350 girf.org Supports research and training programs at the University of Chicago Medical Center, Section of Gastroenterology; sponsors educational activities for the public. Gluten Intolerance Group of North America 15110 10th Ave SW, #A Seattle, WA 98166-1820 (206) 246-6531 gluten.net Provides instructional and general information materials, counseling, and access to gluten-free products and ingredients to persons with celiac sprue and their families; operates telephone information and referral service; conducts educational seminars for health professionals; conducts and supports research; and offers leadership and assistance to 14 affiliates and local member contacts. Hemochromatosis Foundation Inc. P.O. Box 8569 Albany, NY 12208-0569 (518) 489-0972 hemochromatosis.org Provides information to the public, families, and professionals about hereditary hemochromatosis (HH); conducts and raises funds for research; encourages early screening for HH; holds symposiums and meetings; and offers genetic counseling along with support for patients and professionals. Hepatitis B Coalition 1573 Selby Avenue, # 234 St. Paul, MN 55104 (651) 647-9009 immunize.org Works to prevent transmission of hepatitis B in high-risk groups; to achieve vaccination of all infants, children, and adolescents; and to promote education and treatment for the hepatitis B carrier. Hepatitis B Foundation 700 East Butler Avenue Doylestown, PA 18901-2697 (215) 489-4900 hepb.org Provides support and education to people affected by hepatitis B and dedicates itself to eliminating hepatitis B through community education and cure research programs. Hepatitis Foundation International (HFI) 504 Blick Drive Silver Spring, MD 20904-2901 800-891-0707 hepfi.org Fosters worldwide awareness about the prevention, diagnosis, and treatment of viral hepatitis; provides patient and professional education programs; distributes publications; and supports research. A unique service is the Patient Advocacy/Information Telecommunications System, a phone support network that enables patients to talk to others with similar concerns. International Foundation for Functional Gastrointestinal Disorders (IFFGD) PO Box 170864 Milwaukee, WI 53217-8076 (888) 964-2001 iffgd.org Provides support and educational information for people affected by functional gastrointestinal disorders, including irritable bowel syndrome (IBS), constipation, diarrhea, pain, and incontinence. Intestinal Disease Foundation Inc. 100 West Station Square Drive Pittsburgh, PA 15219-1122 (412) 261-5888 intestinalfoundation.org Provides one-on-one telephone support, educational programs and materials, and self-help groups for people with irritable bowel syndrome (IBS) and inflammatory bowel diseases, primarily in the Pennsylvania-Ohio-West Virginia area; sponsors medical seminars and educational meetings; and provides a speakers' bureau, research updates, and physician referral lists. INVISION 8671 So. Quebec St., #100 Highlands Ranch, CO 80126 (720) 493-3388 www.riainvision.com In partnership with Radiology Imaging Associates, offers full service diagnostic imaging in several convenient locations across the Denver area, including state of the art MRI, CT, mammography, diagnostic X-ray, ultrasound, pain management, NIVA, nuclear medicine, and osteoporosis testing; participates in clinical trial research studies. Iron Overload Diseases Association Inc. 433 Westwind Drive North Palm Beach, FL 33408-5123 (561)840-8512 ironoverload.org Conducts professional education symposiums and exhibits at medical meetings; serves and counsels hemochromatosis patients and families; offers doctor referrals; promotes patient advocacy concerning insurance, Medicare, blood banks, and the Food and Drug Administration; encourages research; maintains international consortium; offers public information through the media; develops chapters and self-help groups; and sponsors annual symposiums and annual IOD Awareness Week. National Association For Continence (NAFC) P.O. Box 1019 Charleston, SC 29402-1019 (843) 377-0900 nafc.org 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. National Center for Nutrition and Dietetics (NCND) (800) 366-1655 Provides consumers with direct and immediate access to reliable nutrition information. Callers may speak to a registered dietitian, may listen to regularly updated nutrition messages in English or Spanish, or may be referred to a dietitian in their local area. National Digestive Diseases Information Clearinghouse 2 Information Way Bethesda, MD 20892-3570 (301) 654-3810 digestive.niddk.nih.gov 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. Public Health Service. 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, reviews, and distributes publications; and works closely with professional and patient organizations and Government agencies to coordinate resources about digestive diseases. National Organization for Rare Disorders Inc. (NORD) 55 Kenosia Avenue PO Box 1968 Danbury, CT 06813-1968 (800) 999-6673 (203) 744-0100 rarediseases.org Serves as a clearinghouse for information about rare disorders and brings together families with similar disorders for mutual support; fosters communication among rare disease voluntary agencies, government agencies, industry, scientific researchers, academic institutions, and concerned individuals; and encourages and promotes research and education on rare disorders and orphan drugs. Oley Foundation Inc. 214 Hun Memorial, A-28 Albany Medical Center Albany, NY 12208-3478 (800) 776-OLEY (518) 262-5079 oley.org Promotes and advocates education and research in home parenteral and enteral nutrition; provides support and networking to patients through information clearinghouse and regional volunteer networks; sponsors meetings and conferences, including annual patient/clinician conference; maintains speakers' bureau; manages the North American Home Parenteral and Enteral Nutrition Patient Registry (formerly known as OASIS), a voluntary database of patient-outcome information from across the United States and Canada; and publishes annual summaries of results and basic statistics. Pediatric Crohn's & Colitis Association Inc. P. O. Box 188 Newton, MA 02468 (617) 489-5854 pcca.hypermart.net Focuses on all aspects of pediatric and adolescent Crohn's disease and ulcerative colitis, including medical, nutritional, psychological, and social factors. Activities include information sharing, educational forums, newsletters, a hospital outreach program, and support of research. Pediatric/Adolescent Gastroesophageal Reflux Association Inc. (PAGER) PO Box 486 Buckeystown, MD 21717-0486 (301) 601-9541 reflux.org Gathers and disseminates information on pediatric gastroesophageal reflux and related disorders; provides support and education to patients, their families, and the public; promotes the general welfare of patients with gastroesophageal reflux and their families; and promotes public awareness of the condition. Pull-thru Network 2312 Savoy Street Hoover, Alabama 35226-1528 (205) 978-2930 pullthrough.org Provides 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. Sponsors online discussion groups. A chapter of the United Ostomy Association. Reach Out for Youth with Iletis and Colitis Inc. (516) 822-8010 Provides educational seminars and individual and group support to patients and their families. Sponsor of the Center for Pediatric Ileitis and Colitis at North Shore University Hospital--Cornell University Medical College. Fundraising efforts support the Center's programs, clinical and laboratory research, and purchase of state-of-the-art equipment. Simon Foundation for Continence Box 835-F Wilmette, IL 60091 (800) 23-SIMON simonfoundation.org Seeks to bring the topic of incontinence out of the closet and remove the associated stigma. Provides educational materials to patients, their families, and the health care professionals who provide patient care. Society of American Gastrointestinal Endoscopic Surgeons (SAGES) 11300 West Olympic Boulevard Suite 600 Los Angeles, CA 90064 (310) 437-0544 sages.org The society provides education and training for gastrointestinal and/or abdominal surgeons and surgeons-in-training; identifies and evaluates current and emerging minimal access and non invasive technologies and techniques in gastrointestinal endoscopy and endoscopic surgery; serves as a forum for ideas and the exchange of information in current and emerging minimal access technology and techniques; fosters, supports, and encourages clinical and basic science research; provides guidelines for training, standards of practice and granting of privileges which promote patient safety and the best clinical outcomes; and helps assure that patients are able to obtain the most effective diagnosis and treatment from qualified surgeons. Society of Gastroenterology Nurses and Associates, Inc. (SGNA) 401 North Michigan Avenue Chicago, IL 60611-4267 (800) 245-7462 sgna.org The Society of Gastroenterology Nurses and Associates is a professional organization of nurses and associates dedicated to the safe and effective practice of gastroenterology and endoscopy nursing. SGNA carries out its mission by advancing the science and practice of gastroenterology and endoscopy nursing through education, research, advocacy, and collaboration, and by promoting the professional development of its members in an atmosphere of mutual support. TEF/VATER Support Network 15301 Grey Fox Road Upper Marlboro MD 20772 (301) 952-6837 tefvater.org Provides support to children and adults born with tracheoesophageal fistula (TEF), esophageal atresia, or VATER (V--vertebral defects, A--imperforate anus, TE--tracheoesophageal defects, R--radial and renal dysplasia). United Ostomy Association Inc. (UOA) 19772 MacArthur Blvd., #200 Irvine, CA 92612-2405 800-826-0826 uoa.org Produces and distributes materials about ostomy care and management; through trained UOA members, offers practical assistance and emotional support to ostomy patients; sponsors annual youth rally and State and regional conferences for local affiliates; and 650 chapters serve people locally. Weight-Control Information Network (WIN) Office of Communications and Public Liaison NIDDK, NIH Building 31, Room 9A04 Center Dr. MSC 2560 Bethesda, MD 20892-2560 (800) 946-8098 niddk.nih.gov To address the health information needs of individuals through the production and dissemination of educational materials. In addition, WIN is developing communication strategies for a pilot program to encourage at-risk individuals to achieve and maintain a healthy weight by making changes in their lifestyle. Wilson's Disease Association 1802 Brookside Drive Wooster, Ohio 44691 (800) 399-0266 wilsonsdisease.org Serves as a communications and support network for individuals affected by Wilson's disease and related disorders of copper metabolism; distributes information to professionals and the public.
Top of Page