# NIDDK - Directory of Digestive Diseases Organizations for Patients



## JeanG (Oct 20, 1999)

The URL for this article is: http://www.niddk.nih.gov/health/digest/pub...at/ddorgpat.htm 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 10630 SW. Garden Park PlaceTigard, OR 97223Phone: (503) 639-6217Home page: www.athenet.net/~luxhoj/Alagillesyndrome.html Mission: Provides a support network for children, their parents, and others with Alagille syndrome. Materials: Newsletter--LiverLink. --------------------------------------------------------------------------------American Celiac Society--Dietary Support Coalition 59 Crystal AvenueWest Orange, NJ 07052Phone: (973) 325-8837Fax: (973) 669-8808 Mission: Provides practical assistance to members and individuals with celiac disease and information about the disease to the public. Materials: Newsletter--Whooo's Report. --------------------------------------------------------------------------------American Hemochromatosis Society Inc. (AHS) 777 East Atlantic AvenueSuite Z-363 Delray Beach, FL 33483-5352Phone: (561) 266-9037Fax: (561) 278-0171 Email: ahs###emi.net Home page: www.americanhs.org/ Mission: Educates 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; also facilitates patient empowerment through an online network. --------------------------------------------------------------------------------American Liver Foundation (ALF) 75 Maiden LaneSuite 603New York, NY 10038-4810Phone: (800) 465-4837 or (888) 443-7222Fax: (973) 256-3214 Email: info###liverfoundation.org Home page: www.liverfoundation.org/ Mission: 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 groups through local chapters. Materials: Member newsletter--Progress; clinical newsletter for physicians--Liver Update; pamphlets, fact sheets, and videos about liver diseases, transplantation, organ donation, and prevention of liver diseases. --------------------------------------------------------------------------------American Porphyria Foundation P.O. Box 22712 Houston, TX 77227 Phone: (713) 266-9617 Home page: www.enterprise.net/apf/ Mission: Advances awareness, research, and treatment of the porphyrias; provides self-help services for members; and provides 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. --------------------------------------------------------------------------------American Pseudo-Obstruction and Hirschsprung's Disease Society Inc. (APHS) 158 Pleasant StreetNorth Andover, MA 01845Phone: (978) 685-4477Fax: (978) 685-4488Email: aphs###tiac.net Home page: www.tiac.net/users/aphs/ Mission: 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 parent-to-parent contact, publications, and educational symposia; and encourages and supports 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. --------------------------------------------------------------------------------American Society of Adults with Pseudo-Obstruction Inc. (ASAP) International Corporate Headquarters19 Carroll RoadWoburn, MA 01801Phone: (781) 935-9776Fax: (781) 933-4151Email: asapgi###sprynet.com Mission: Educates the general public and medical community about chronic intestinal pseudo-obstruction (CIP) and other related digestive motility disorders; serves as an integral source 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. Materials: Journal--ASAP Forum; general membership newsletter--ASAP Digest; professional membership newsletter--ASAP Capsule; questionnaires; Social Security booklet; video of 1997 symposium; reference articles; and educational materials. --------------------------------------------------------------------------------Celiac Disease Foundation (CDF) 13251 Ventura Boulevard, #1Studio City, CA 91604-1838Phone: (818) 990-2354Fax: (818) 990-2379 Email: cdf###celiac.orgHome page: www.celiac.org/ Mission: 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; free information packets; medical advisory board; and special educational seminars and general meetings. Materials: Quarterly newsletter--Guidelines for a Gluten-Free Lifestyle; brochures. Annual dues: $35. --------------------------------------------------------------------------------Celiac Sprue Association/USA Inc. P.O. Box 31700Omaha, NE 68131-0700Phone: (402) 558-0600Fax: (402) 558-1347 Home page: www.csaceliacs.org/ Mission: Provides information and referral services for persons with celiac sprue and dermatitis herpetiformis and parents of celiac children. Made up of 6 regions in the United States with 84 chapters and 36 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 people with celiac disease--Lifeline; membership forms; chapter information; resource unit information; and promotional brochure. --------------------------------------------------------------------------------Crohn's & Colitis Foundation of America Inc. 386 Park Avenue South, 17th floorNew York, NY 10016-8804Phone: (800) 932-2423 or (212) 685-3440Fax: (212) 779-4098Email: info###ccfa.orgHome page: www.ccfa.org/ Mission: 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, 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 web site (www.ccfa.org). --------------------------------------------------------------------------------Cyclic Vomiting Syndrome Association (CVSA) CVSA USA/CanadaDebra Waites, Administrator3707 Cedar Hill Road, NW. Canal Winchester, OH 43110Phone: (614) 837-2586Fax: (614) 837-6543Email: drwaites###infinet.comHome page: www.beaker.iupui.edu/cvsa/ Mission: Provides opportunities for patients, families, and professionals to offer and receive support and share knowledge about cyclic vomiting syndrome; actively promotes and facilitates medical research about nausea and vomiting; increases worldwide public and professional awareness; and serves as a resource center for information. Materials: Member newsletter--Code V; patient education publications. --------------------------------------------------------------------------------Digestive Disease National Coalition 507 Capitol Court NE., Suite 200Washington, DC 20002Phone: (202) 544-7497Fax: (202) 546-7105 Mission: 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. Materials: Brochures; patient education materials. --------------------------------------------------------------------------------EA-TEF-VATER/VACTERL International 15301 Grey Fox RoadUpper Marlboro, MD 20772Phone: (301) 952-6837Email: tefvater###ix.netcom.comMission: Provides support to children and adults born with esophageal atresia (EA), tracheoesophageal fistula (TEF), or VACTERL (V--vertebral, A--anal, C--cardial, T--trachia, E--esophagus, R--radial and renal, L--limb). Materials: Newsletter--TEF/VATER SUPPORT Newsletter; general information. --------------------------------------------------------------------------------Food Allergy Network 10400 Eaton Place, Suite 107Fairfax, VA 22030Phone: (703) 691-3179Fax: (703) 691-2713Email: fan###worldweb.netHome page: www.foodallergy.org/ Mission: Increases public awareness about food allergies and anaphylaxis, advances research, and provides education, emotional support, and coping strategies to patients. Serves 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; a cookbook; and special-alert mailings informing members of product information including ingredient changes, recalls, or packaging mishaps. --------------------------------------------------------------------------------Gastro-Intestinal Research Foundation 70 East Lake Street, Suite 1015Chicago, IL 60601-5907Phone: (312) 332-1350Fax: (312) 332-4757 Home page: www.girf.org/ Mission: Supports research and training programs at the University of Chicago Medical Center, Section of Gastroenterology; sponsors 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) 15110 10th Avenue, SW.Suite ASeattle, WA 98166-1820Phone: (206) 246-6652Fax: (206) 246-6531Email: gig###accessone.com Mission: 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. Materials: Cookbook; dietary recommendations; fact sheets; member newsletter--GIG Newsletter; videotapes; patient packets for celiac sprue and dermatitis herpetiformis; dietary guidelines for hospitalized persons with celiac sprue and dermatitis herpetiformis. --------------------------------------------------------------------------------The Hemochromatosis Foundation Inc. P.O. Box 8569Albany, NY 12208Phone: (518) 489-0972 Fax: (518) 489-0227Home page: www.hemochromatosis.org/ Mission: 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, 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 CoalitionImmunization Action Coalition 1573 Selby Avenue, Suite 234St. Paul, MN 55104Phone: (651) 647-9009Fax: (651) 647-9131Email: admin###immunize.org, mail###immunize.org, medinfo###immunize.org Home page: http://www.immunize.org/ Mission: Works to prevent transmission of hepatitis B in high-risk groups; to promote HBsAg screening for all pregnant women; to achieve vaccination of all infants, children, and adolescents; and to promote education and treatment for the person who is chronically infected with hepatitis B. Materials: Two newsletters--NEEDLE TIPS & the Hepatitis B Coalition News and VACCINATE ADULTS!; brochures; articles; videotapes; audiocassette tapes; manuals for different ethnic populations. --------------------------------------------------------------------------------Hepatitis B Foundation 700 East Butler AvenueDoylestown, PA 18901-2697 Phone: (215) 489-4900Fax: (215) 489-4920Email: info###hepb.orgHome page: www2.hepb.org/Mission: Dedicated to the cause and cure of chronic hepatitis B through research, education, and patient support. Provides information and referrals to people affected by hepatitis B and their loved ones. Materials: Newsletter--Bï¿½Informed; brochures--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 HBV research, telephone numbers, and a medical glossary; directory--National Directory of Liver Specialists; video--Hepatitis B Video. --------------------------------------------------------------------------------Hepatitis Foundation International (HFI) 30 Sunrise TerraceCedar Grove, NJ 07009-1423Phone: (973) 239-1035 or (800) 891-0707Fax: (973) 857-5044Email: hfi###intac.comHome page: www.hepfi.org/ Mission: The Hepatitis Foundation International (HFI) provides education, training programs, and materials for the public, patients, educators, and medical professionals about the diagnosis, treatment, and prevention of viral hepatitis. HFI supports research to find cures and provides a telephone support network for patients, a toll-free hotline in the United States and Canada, a database of hepatitis support groups, and a web site 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; and newsletter--Hepatitis Alert. --------------------------------------------------------------------------------International Foundation for Functional Gastrointestinal Disorders (IFFGD) P.O. Box 170864 Milwaukee, WI 53217-8076Phone: (414) 964-1799 or (888) 964-2001Fax: (414) 964-7176 Email: iffgd###iffgd.orgHome page: www.iffgd.org/ Mission: Provides support and educational information for people affected by functional gastrointestinal disorders, including irritable bowel syndrome (IBS), constipation, diarrhea, pain, and incontinence. Materials: Quarterly newsletter--Participate; educational pamphlets; and fact sheets. --------------------------------------------------------------------------------Intestinal Disease Foundation Inc. 1323 Forbes Avenue, Suite 200Pittsburgh, PA 15219Phone: (412) 261-5888Fax: (412) 471-2722 Mission: Provides one-on-one telephone support, educational programs and materials, and self-help groups for people with irritable bowel syndrome (IBS), diverticular disease, inflammatory bowel diseases, and short bowel syndrome; sponsors educational seminars; provides research updates and physician referral lists. Materials: Member newsletter--Intestinal Fortitude; brochures; and books. --------------------------------------------------------------------------------Iron Overload Diseases Association Inc. 433 Westward DriveNorth Palm Beach, FL 33408-5123 Phone: (561) 840-8512Fax: (561) 842-9881Email: iod###ironoverload.orgHome page: www.ironoverload.org/ Mission: 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 clearinghouse; offers public information through the media; develops chapters and self-help groups; and sponsors 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 8310Spartanburg, SC 29305-8310Phone: (800) BLADDER or (864) 579-7900Fax: (864) 579-7902Home page: www.nafc.org/ Mission: 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 216 West Jackson Boulevard, Suite 800Chicago, IL 60606-6995Phone: (800) 366-1655 or (900) 225-5267Fax: (312) 899-4739Home page: www.eatright.org/ Mission: Provides consumers with direct and immediate access to reliable nutrition information. Call (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. Call (900) 225-5267 for personalized answers to your nutrition questions from a registered dietitian. (Cost of call is $1.95 for the first minute and $.95 for each additional minute.) --------------------------------------------------------------------------------National Organization for Rare Disorders Inc. (NORDï¿½) P.O. Box 8923New Fairfield, CT 06812-8923Phone: (800) 999-6673 or (203) 746-6518Fax: (203) 746-6481Email: orphan###rarediseases.org Home page: www.rarediseases.org/ Mission: 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. Materials: Reports on rare disorders; newsletter--Orphan Disease Update. --------------------------------------------------------------------------------The Oley Foundation Inc. 214 Hun Memorial, A-23Albany Medical CenterAlbany, NY 12208-3478Phone: (800) 776-OLEY or (518) 262-5079Fax: (518) 262-5528Email: bishopj###mail.amc.eduHome page: www.wizvax.net/oleyfdn/ Mission: 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. Materials: North American HPEN Patient Registry Report; audiovisual materials on psychosocial issues. --------------------------------------------------------------------------------Pediatric/Adolescent Gastroesophageal Reflux Association Inc. (PAGER) P.O. Box 1153Germantown, MD 20875-1153Phone: (301) 601-9541Email: GERGROUP###aol.comHome page: www.reflux.org/ Mission: 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. Materials: Literature on gastroesophageal reflux and related disorders with descriptions of tests, procedures, medications, and parent-tested home care techniques; monthly newsletter. --------------------------------------------------------------------------------Pediatric Crohn's & Colitis Association Inc. P.O. Box 188Newton, MA 02468Phone: (617) 489-5854Email: questions###pcca.hypermart.netHomepage: pcca.hypermart.net/Mission: 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. 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. --------------------------------------------------------------------------------Pull-thru Network 316 Thomas StreetBessemer, AL 35020Phone: (205) 428-5953Email: Pullthru###bellsouth.netHome page: www.pullthrough.org Mission: A parent support and information network to help patients and families of children born with anorectal malformations such as imperforate anus, cloaca, VATER, and their associated issues, or other fecal incontinence problems. Sponsors online discussion groups. A chapter of the United Ostomy Association. Materials: Quarterly publication--Pull-thru Network News. --------------------------------------------------------------------------------Reach Out for Youth with Ileitis and Colitis Inc. 84 Northgate CircleMelville, NY 11747Phone: (516) 293-3102Fax: (516) 293-3103Mission: Provides educational seminars and individual and group support to patients and their families. Fundraising efforts support the Center's programs, clinical and laboratory research, and 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 815Wilmette, IL 60091Phone: (800) 23-SIMON or (847) 864-3913 Fax: (847) 864-9768Home page: www.simonfoundation.org/html/index2.htm Mission: 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. 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; a community outreach program led by professionals--I WILL MANAGE program director's kit; and additional patient education materials. --------------------------------------------------------------------------------United Ostomy Association Inc. (UOA) 19772 MacArthur Boulevard, Suite 200Irvine, CA 92612-2405Phone: (800) 826-0826 or (949) 660-8624Fax: (949) 660-9262Email: uoa###deltanet.comHome page: www.uoa.org/ Mission: 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; has 500 chapters to serve people locally. Materials: Journal--Ostomy Quarterly; patient education pamphlets; self-care handbooks; audiovisual program. --------------------------------------------------------------------------------Weight-control Information Network (WIN) 1 WIN WayBethesda, MD 20892-3665Phone: (202) 828-1025 or 1-877-946-4627Fax: (202) 828-1028Email: win###mathewsgroup.comHome page: www.niddk.nih.gov/health/nutrit/win.htm Mission: 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. Materials: Fact sheets, pamphlets, reprints, consensus statements, reports, and literature searches on weight control, obesity, and weight-related nutritional disorders; semiannual newsletter--WIN Notes. --------------------------------------------------------------------------------Wilson's Disease Association 4 Navaho DriveBrookfield, CT 06804Phone: (800) 399-0266Direct Dial: (203) 775-9666Fax: (203) 743-6196Email: hasellner###worldnet.att.netHome page: www.wilsonsdisease.org/ Mission: Serves as a communications and support network for individuals affected by Wilson's disease; distributes information to professionals and the public; referrals; and meetings. Materials: Fact sheets about Wilson's disease and member newsletter. --------------------------------------------------------------------------------National Digestive Diseases Information Clearinghouse 2 Information WayBethesda, MD 20892-3570Phone: (301) 654-3810Fax: (301) 907-8906Email: National Digestive Diseases Information Clearinghouse The National Digestive Diseases Information Clearinghouse (NDDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). 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, reviews, 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 for scientific accuracy, content, and readability. This e-text is not copyrighted. The clearinghouse encourages users of this e-pub to duplicate and distribute as many copies as desired. -------------------------------------------------------------------------------- May 1998 e-text last updated: August 2000


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