Associations Providing NUTRITION SUPPORT Support for Patients American Society for Parenteral and Enteral Nutrition (ASPEN) with Digestive Diseases 8630 Fenton Street, Suite 412 Compiled by Stacey McCray, R.D. and Carol Rees Parrish, M.S., R.D., Silver Spring, MD 20910 Nutrition Support Specialists at the University of Virginia Health 800-727-4567; 301-587-6315 Science Center www.nutritioncare.org E-Mail: [email protected] GENERAL GI Promotes communication between professionals involved in the area of nutrition support, promotes proper application of nutrition American Gastroenterological Association support, and encourages professional competence in the field of 4930 Del Ray Avenue nutrition support. Bethesda, MD 20814 301-654-2055 The Oley Foundation, Inc. www.gastro.org 214 Hun Memorial A-28 E-mail: [email protected] Albany Medical Center The oldest medical-specialty society in the U.S. Dedicated to the Albany, NY 12208-3478 mission of advancing the science and practice of ; 800-776-OLEY; 518-262-5079 publishes two highly respected journals each month; has a patient center through which patients can learn more about their digestive www.oley.org health and GI disorders and locate a doctor in their area. E-Mail: [email protected] Devoted to enhancing the lives of those requiring home nutrition Digestive Disease National Coalition support by coordinating a newsletter, an informational web site, 507 Capitol Court, N.E. regional and national patient-focused conferences, and networking Suite 200 opportunities. Washington, D.C. 20002 202-544-7497 www.ddnc.org MOTILITY DISORDERS An advocacy organization focused on improving public policy American Motility Society related to digestive diseases and increasing public awareness of dis - 45685 Harmony Lane eases of the digestive system. Very good site for other links. Belleville, MI 48111 734-699-1130 National Digestive Diseases Information Clearinghouse www.motilitysociety.org Information Clearinghouse Email: [email protected] 2 Information Way The group’s mission is to advance the study of neurogastroenterol - Bethesda, MD 20892-3570 ogy and GI motility, to translate the scientific advances to patient 800-891-5389 care, and to disseminate the knowledge to patients and care-givers 301-654-3810 in order to improve the diagnosis and treatment of patients with www.niddk.nih.gov/health/digest/nddic.htm neurogastroenterology and GI motility disorders. An information dissemination service; goal is to increase knowledge and understanding about digestive diseases among people with Association of Gastrointestinal Motility Disorders, Inc. these conditions, health care professionals, and the general public. (AGMD) 12 Roberts Drive National Institute of Diabetes and Digestive Bedford, MA 01730 and Kidney Disease (NIDDK) 781-275-1300 Building 31, Room 9A-04 www.agmd-gimotility.org 31 Center Drive, MSC 2560 E-Mail: [email protected] Bethesda, MD 20892-2560 Non-profit international organization which serves as an educational 301-496-3583 resource concerning digestive motility diseases and disorders, func - www.niddk.nih.gov tions as an important information base for members of the medical Conducts and supports research on many of the most serious dis - and scientific communities, and provides a forum for patients suf - eases affecting public health.

42 PRACTICAL GASTROENTEROLOGY • SEPTEMBER 2006 Associations Providing Support for Patients with Digestive Diseases

fering from digestive motility diseases and disorders, their families, PANCREAS and members of the medical community. The National Pancreas Foundation 364 Boylston Street, 4th Floor Carcinoid Cancer Foundation, Inc. Boston, MA 02116 The Carcinoid Cancer Foundation, Inc. 866-726-2737 333 Mamaroneck Avenue # 492 www.pancreasfoundation.org White Plains, NY 10605 Supports the research of diseases of the pancreas and provides 888-722-3132; 914-683-1001 information and humanitarian services to those people who are suf - www.carcinoid.org fering from such illnesses. Non-profit organization encouraging and supporting research and education regarding carcinoid and related neuroendocrine tumors. LIVER and Dysmotilities Association (GDPA) Children’s Foundation 5520 Dalhart Hill, N.W. 36 Great Charles Street, Calgary AB Canada T3A 1S9 Birmingham, B3 3JY, United Kingdom +44 (0) 121 212 3839 GPDA-USA www.childliverdisease.org/ 300 Remington Drive E-Mail: [email protected] Brandon, MS 39042 The group’s mission is to fight childhood liver disease through fund - 403-247-3215 ing pioneering medical research, providing effective education and www.digestivedistress.com/index.htm giving professional and caring support to families and young people E-Mail: [email protected] (GDPA-USA); [email protected] (GDPA) with liver disease. A North American-wide non-profit group focused on education, aware - ness, advocacy, and support for research into digestive motility prob - American Liver Foundation’s (ALF) lems, providing an on-line forum and patient educational booklets. 75 Maiden Lane, Suite 603 New York, NY 10038 Cyclic Syndrome Association (CVSA) 800-GO-LIVER (465-4837); 888-4HEP USA (443-7872) CVSA USA/Canada www.liverfoundation.org 3585 Cedar Hill Road, N.W. E-Mail: [email protected] Canal Winchester, OH 43110 The nation’s leading nonprofit organization promoting liver health 614-837-2586 (phone/fax) and disease prevention; provides research, education and advo - www.CVSAonline.org cacy for those affected by liver-related diseases including . E-Mail: [email protected] Raises awareness and provides education and support to those Canadian Liver Foundation affected by cyclic vomiting, abdominal and related disor - 2235 Sheppard Avenue East, Suite 1500 ders while advocating for and funding research. Toronto, ON M2J 5B5 800-563-5483; 416-491-3353 International Foundation for Functional Gastrointestinal www.liver.ca/Home.aspx; E-Mail: [email protected] Disorders (IFFGD) Group’s mandate is to promote liver health and to reduce the inci - Formerly: International Foundation for Bowel Dysfunction dence and impact of all liver disease; works through volunteer chap - P.O.Box 170864 ters across the country to improve public awareness and under - Milwaukee, WI 53217-8076 standing of liver health and liver disease, raise funds for research, 1-888-964-2001; 414-964-1799 and reach out to liver disease patients and their families. www.IFFGD.org E-Mail: [email protected] Primary Biliary (PBCers) PBCers Organization Nonprofit education and research organization addressing the www.pbcers.org issues surrounding life with gastrointestinal functional and motility E-mail: [email protected] disorders and increasing the awareness about these disorders 1430 Garden Rd. among the general public, researchers, regulators, and the clinical Pearland, TX 77581 care community; mission is to inform, assist, and support people Support and education system for Primary Biliary Cirrhosis (PBC) affected by gastrointestinal disorders. patients, family members and friends.

PRACTICAL GASTROENTEROLOGY • SEPTEMBER 2006 43 Associations Providing Support for Patients with Digestive Diseases

OTHER GI ORGANIZATIONS Celiac Disease Foundation (CDF) American Partnership for Eosinpohilic Disorders 13251 Ventura Blvd. #1 3419 Whispering Way Drive Studio City, CA 91604 Richmond, Texas 77469 818-990-2354 ; Fax: 818-990-2379 713-498-8216 www.celiac.org www.apfed.org E-Mail: [email protected] Non-profit, public benefit corporation dedicated to providing services E-Mail: [email protected] and support regarding Celiac Disease and Dermititis Herpetiformis Non-profit organization working to improve awareness, education through programs of awareness, education, advocacy and research. and research funding for eosinophil associated disorders and sup - port families living with eosinophil associated disorders including Canadian Celiac Association eosinophilic , eosinophilic , hypere - 5170 Dixie Rd, Suite 204 osinophilic syndrome and others. Mississauga, ON L4W 1E3 800-363-7296 United Ostomy Associations of America, Inc www.celiac.ca/ P.O. Box 66 E-Mail: [email protected] Fairview, TN 37062-0066 National organization providing services and support to persons 800-826-0826 with Celiac Disease and Dermatitis Herpetiformis through programs www.uoaa.org of Awareness, Advocacy, Education, and Research. E-Mail: [email protected] Association of affiliated, volunteer managed, non-profit support Celiac Sprue Association/USA, Inc. groups committed to the improvement of the quality of life of peo - P.O. Box 31700 ple who have, or will have, a bowel or urinary diversion and dedi - Omaha, NE 68131-0700 cated to the provision of information, advocacy and service to its 877-CSA-4-CSA; 402-558-0600 affiliated support groups, their members and the bowel/urinary www.csaceliacs.org diversion community. E-Mail: [email protected] Member based non-profit organization dedicated to helping individ - uals with celiac disease and dermatitis herpetiformis worldwide CELIAC through education, research and support. Gluten Intolerance Group (GIG) 15110 10th Ave, S.W., Suite A Seattle, WA 98166 CROHN’S AND 206-246-6652 Crohn’s and Colitis Foundation of America, Inc www.gluten.net 386 Park Avenue South, 17th floor E-Mail: [email protected] New York, NY 10016-8804 Provides support to persons with gluten intolerances, including 800-932-2423 celiac disease, dermatitis herpetiformis, and other gluten sensitivi - www.ccfa.org ties, in order to live healthy lives. E-Mail: [email protected] Non-profit, volunteer-driven organization dedicated to finding the American Celiac Society cure for Crohn’s disease and and to improving the PO Box 23455 quality of life of children and adults affected by these digestive dis - New Orleans, LA 70183-0455 eases through education and support. 504-737-3293 www.americanceliacsociety.org Reach Out for Youth with and Colitis, Inc. E-Mail: [email protected] 84 Northgate Circle Non-profit tax exempt organization providing counseling and educa - Melville, NY 11747 tion to individuals with Celic Disease, Dermatitis Herpetiformis, 631-293-3102 Crohn’s disease, Lactose Intolerance, Wheat Intolerance and other www.reachoutforyouth.org dietary disorders. Information is also provided to the medical com - E-Mail: [email protected] munity with limited information in Spanish and Italian. Helps children with Crohn’s disease, ulcerative colitis and other gas - trointestinal diseases and their families through personal support and education.

44 PRACTICAL GASTROENTEROLOGY • SEPTEMBER 2006