Directory of Digestive Diseases Organizations for Patients

Alagille Syndrome Alliance

10630 S.W. Garden Park Place
Tigard, OR 97223
(503) 639-6217

Purpose: Provides a support network for children, their parents, and others with Alagille syndrome.

Materials: Newsletter - LiverLink.

58 Musano Court
West Orange, NJ 07052
(201) 325-8837

Purpose: Provides practical assistance to members and individuals with celiac disease and information about the disease to the public.

Materials: Newsletter-Whooo's Report.

1425 Pompton Avenue
Cedar Grove, NJ 07009
(800) 223-0179 or (201) 256-2550

Purpose: Creates awareness and supports research on liver disease; disseminates information about liver wellness, liver diseases 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 groups through local chapters.

Materials: Newsletter for members-Progress; clinical newsletter for physicians-Liver Update; and pamphlets and fact sheets about liver diseases, transplantation, organ donation, and prevention of liver diseases.

P.O. Box 22712
Houston, TX 77227
(713) 266-9617

Purpose: Advances awareness, research, and treatment of the porphyrias; provides self-help services for members; provides referrals to porphyria treatment specialists.

Materials: Informational brochures-Common Questions About Porphyria, Acute Intermittent Porphyria, Porphyria Cutanea Tarda (PCT), Diet and Nutrition in Porphyria, Hematin, Erythropoietic Protoporphyria (EPP), and EPP In Children and newsletter.

International Corporate Headquarters
19 Carroll Road
Woburn, MA 01801
(617) 935-9776

Purpose: Advocacy group that educates the public and medical community about the existence of chronic intestinal pseudo-obstruction (CIP); provides support for adults affected with the disease; serves as resource for physicians for information about CIP as it affects adults; supplies information about disability, social security, medical insurance, drug protocols, and practical strategies for dealing with the many components of CIP; maintains a reference library of pertinent articles from recognized medical journals for patients and physicians; maintains close contact with physicians at major medical institutions who treat adults with CIP; and provides referral lists of physicians willing to diagnose and treat adults with CIP.

Materials: Member newsletter-ASAP Forum.

13251 Ventura Blvd. #3
Studio City, CA 91604
(818) 990-2354

Purpose: Non-profit corporation that provides services and support to persons 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.

Materials: Member newsletter; brochure; gluten-free food sources; and special announcements.

P.O. Box 31700
Omaha, NE 68131-0700
(402) 558-0600

Purpose: National support organization that 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.

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 celiacs-Lifeline; membership forms; chapter information; resource unit information; and promotion brochure.

Central DuPage Hospital
25 North Winfield Road
Winfield, IL 60190-1295
(708) 682-1600 Ext. 6493

Purpose: Multifaceted program to meet the needs of people who suffer from gastrointestinal problems; offers literature, videotapes, and educational meetings; and if medical care is needed, appropriate referrals are made.

Materials: Individual packets of information sent based on complaints, diseases, or symptoms; and videotapes for viewing on many topics.

386 Park Avenue South, 17th floor
New York, NY 10016-7374
(800) 932-2423 or (212) 685-3440

Purpose: Supports basic and clinical research into 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 more than 97 chapters and satellite groups.

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; and magazine for foundation supporters-Foundation Focus.

13180 Caroline Court
Elm Grove, NJ 53122
(414) 784-6842

Purpose: Provides patients, families, and professionals opportunities to offer and receive support and share knowledge about cyclic vomiting syndrome; actively promotes and facilitates medical research; increases worldwide public and professional awareness; and serves as a resource center for information.

Materials: Newsletter for members-Code V.

711 2nd Street, NE, Suite 200
Washington, DC 20002
(202) 544-7497

Purpose: 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.

Material: Brochures and newsletter

70 East Lake Street, Suite 1015
Chicago, IL 60601
(312) 332-1350

Purpose: Supports research and training programs at the University of Chicago Medical Center, Section of Gastroenterology; sponsors educational activities for the public.

Materials: Newsletter and patient education pamphlet-Inflammatory Bowel Disease.

P.O. Box 23053
Seattle, WA 98102-0353
(206) 325-6980

Purpose: Provides instructional and general information materials, as well as 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.

Materials: Cookbook; dietary recommendations; fact sheets; member newsletter; videotapes; patient packets for celiac sprue and dermatitis herpetiformis; and dietary guidelines for hospitalized persons with celiac sprue and or dermatitis herpetiformis.

62 Edgewood Avenue
Wyckoff, NJ 07481
(201) 891-5977

Purpose: A national support network providing emotional support and information to patients and families of children who have had or will have a pull-thru type surgery to correct an imperforate anus or associated malformation, Hirschsprung's or other fecal incontinence problems. Support group meetings held quarterly. A chapter of United Ostomy Association.

Materials: Quarterly publication-Pull-thru Network News.

P.O. Box 544
Union, SC 29379
(800) BLADDER or (803) 579-7900

Purpose: 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-The HIP Report; Resource Guide of Continence Products and Services; and other educational materials, including books and audiovisuals.

P.O. Box 8569
Albany, NY 12208
(518) 489-0972

Purpose: Through publications, symposia, and meetings provides information to the public, hemochromatosis families, and professionals about hereditary hemochromatosis (HH); conducts and raises funds for research; encourages early screening for HH; amd offers genetic counseling along with support for patients and professionals.

Materials: Informational booklets for the public, affected families and professionals; and audio-visual materials for the public, and professionals.

1573 Selby Avenue, Suite 229
Saint Paul, MN 55104-6328
(612) 647-9009

Purpose: 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.

Materials: Newsletter - Hepatitis B Coalition News, brochures, articles, videotapes, audio-cassette tapes, and manuals for different ethnic populations.

P.O. Box 17864
Milwaukee, WI 53217
(414) 964-1799

Purpose: Provides support and educational information for people affected by the various forms of functional bowel disorders, including irritable bowel syndrome (IBS), constipation, diarrhea, pain, and incontinence.
Materials: Quarterly newsletter-Participate; educational pamphlets; and fact sheets.

1323 Forbes Avenue, Suite 200
Pittsburgh, PA 15219
(412) 261-5888

Purpose: 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.

Materials: Member newsletter-Intestinal Fortitude; brochures; and books.

433 Westwind Drive
N. Palm Beach, FL 33408
(407) 840-8512

Purpose: Conducts programs, including professional education through symposia 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 symposium and annual IOD Awareness Week.

Materials: Booklet-Overload: An Ironic Disease; bimonthly newsletter-Ironic Blood; informational brochure-Iron Overload Alert; and fact sheet.

216 W. Jackson Boulevard
Chicago, IL 60606-6995
Consumer Nutrition Hot Line: (800) 366-1655

Purpose: Provides consumers with direct and immediate access to reliable nutrition information. Callers may speak with a registered dietitian directly, may listen to regularly updated recorded nutrition messages in English and Spanish, or may be referred to a dietitian in their local area.

P.O. Box 8923
New Fairfield, CT 06812-1783
(800) 999-6673 or (203) 746-6518

Purpose: Acts as a clearinghouse for information about rare disorders and networks families with similar disorders together for mutual support; fosters communication among rare disease voluntary agencies, government bodies, industry, scientific researchers, academic institutions, and concerned individuals; and encourages and promotes research and education on rare disorders and Orphan Drugs.

Materials: Fact sheets and reprints on rare disorders and newsletter-Orphan Disease Update.

214 Hun Memorial A-23
Albany Medical Center
Albany, NY 12208
(800) 776-OLEY or (518) 445-5079

Purpose: Promotes and advocates education and research in home parenteral and enteral nutrition; provides support and networking to patients through information clearinghouse and regional volunteer network; sponsors meetings and conferences, including annual patient/clinician conference; maintains consumers' representative speakers bureau; manages the North American Home Parenteral and Enteral Nutrition Patient Registry, formerly known as OASIS, which is a voluntary database of patient outcome information from across the United States and Canada, and publishes annual summaries of results and basic statistics.

Materials: Newsletters-Lifeline Letter and Lifeline p.s., published monthly; North American HPEN Patient Registry report, published annually, containing summaries of results and basic statistics on home parenteral and enteral nutrition patient outcomes; and audiovisual materials on psychosocial issues.

P.O. Box 188
Newton, MA 02168
(617) 244-6678

Purpose: 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, and hospital outreach program as well as support of research.

Materials: Information pamphlet; The ABC's of Pediatric Inflammatory Bowel Disease; Crohn's Disease, Ulcerative Colitis, and School; PCCA newsletters; video material; and membership forms.

15 Chemung Place
Jericho, NY 11753
(516) 822-8010

Purpose: Non-profit organization providing educational seminars and both 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. Fund-raising efforts support the Center's programs, clinical and laboratory research, and purchase of state-of-the-art equipment.

Materials: Newsletter-The Inner Circle and educational brochure-The Inside Story.

15301 Grey Fox Road
Upper Marlboro, MD 20772
(301) 627-2131

Purpose: Dedicated to the support of children and adults born with tracheoesophageal fistula, esophageal atresia, or VATER (V-vertebral defects, A-imperforate anus, TE-tracheoesophageal defects, R-radial and renal dysplasia).

Materials: Newsletter-TEF/VATER SUPPORT Newsletter and general information.

P.O. Box 835
Wilmette (Chicago), IL 60091
(800) 23-SIMON or (708) 864-3913

Purpose: Seeks to bring the topic of incontinence out of the closet and remove the stigma associated with it; provides educational materials to patients, their families, and the health care professionals who provide their care.

Materials: Quarterly newsletter-The Informer; hardbound 122 page book-Managing Incontinence: A Guide to Living with Loss of Bladder Control; video-"The Solution Starts with You"; I WILL MANAGE program director's kit-a community outreach program led by professionals; and additional patient education materials.

36 Executive Park, Suite 120
Irvine, CA 92714-6744
(800) 826-0826 or (714) 660-8624

Purpose: 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.

Materials: Journal-Ostomy Quarterly; patient education pamphlets; self-care handbooks; and audiovisual program.

P.O. Box 75324
Washington, DC 20013
(703) 636-3003

Purpose: Serves as a communications and support network for individuals affected by Wilson's disease and related disorders of copper metabolism; and distributes information to professionals and the public.

Materials: Fact sheets about Wilson's disease and member newsletter.

2 Information Way
Bethesda, MD 20892-3570
(301) 654-3810

The National Digestive Diseases Information Clearinghouse is a service of the National Institute of Diabetes and Digestive and Kidney Diseases, part of the National Institutes of Health, under the U.S. Public Health Service. The clearinghouse, authorized by Congress in 1980, provides information about digestive diseases and health to people with digestive diseases and their families, health care professionals, and the public. The clearinghouse answers inquiries; develops, reviews, and distributes publications; and works closely with professional and patient organizations and government agencies to coordinate resources about digestive diseases.

This epub is not copyrighted. The clearinghouse encourages users to duplicate and distribute as many copies as needed.

September 1994