| Digestive Diseases A-Z List of Topics and Titles :Directory of Digestive Diseases Organizations |
Directory of Digestive Diseases OrganizationsThis directory lists Government agencies and professional and voluntary associations that provide digestive diseases-related information and resources. Some of these organizations offer educational materials and other services to patients and the general public, while others primarily serve health care professionals. Alagille Syndrome Alliance10500 SW Starr Drive Mission: To provide a support network for children, their parents, and others with Alagille syndrome (AGS). The purpose of the Alliance is to serve as the main networking resource and source of information for people with AGS and their family, friends, and health care providers. The Alliance also is dedicated to increasing public awareness of AGS and supporting research efforts on behalf of the AGS community. Materials: LiverLink (newsletter); Alagille Syndrome in the Classroom (booklet); Allagille Syndrome (brochure published by the American Liver Foundation). [Top] Alpha-1 Foundation2937 SW 27th Avenue, Suite 302 Mission: To provide leadership and resources that will result in increased research, improved health, worldwide detection, and a cure for alpha-1-antitrypsin deficiency, a genetically inherited disease affecting either the liver or lung in children and adults. Materials: Information for health care providers, researchers, patients, friends, and family members. [Top] American Association for the Study of Liver Diseases (AASLD)1001 North Fairfax, Suite 400 Mission: To advance the science and practice of hepatology, thereby promoting liver health and optimal care of patients with liver and biliary tract diseases. Materials: Hepatology and Liver Transplantation (online journals); newsletter; membership directory. [Top] American Celiac Disease Alliance (ACDA)2504 Duxbury Place Mission: To represent and advocate on behalf of the entire celiac community—patients, physicians, researchers, and food manufacturers and other service providers. Materials: Celiac Disease: A Hidden Epidemic and Gluten-Free Diet: A Comprehensive Resource Guide (books); Gluten-Free Living (magazine). [Top] American College of Gastroenterology (ACG)P.O. Box 342260 Mission: To serve clinical and scientific information needs of member physicians and surgeons who specialize in digestive and related disorders. Emphasis is on clinical practice, teaching, and research. Materials: American Journal of Gastroenterology and Nature Clinical Practice Gastroenterology & Hepatology (journals); member newsletter; patient education brochures and online resources. [Top] American Dietetic Association (ADA)120 South Riverside Plaza, Suite 2000 Mission: To promote optimal nutrition and well-being for all people by advocating for its members. Materials: The Journal of the American Dietetic Association (monthly professional journal); ADA Courier (monthly newsletter); books and other resources for consumers and professionals. [Top] American Gastroenterological Association (AGA)4930 Del Ray Avenue Mission: To serve as an advocate for the AGA’s members and their patients, to support members’ practice and scientific needs, and to promote the discovery, dissemination, and application of new knowledge leading to the prevention, treatment, and cure of digestive diseases. Materials: Gastroenterology and Clinical Gastroenterology and Hepatology (journals); GI Practice Management News (weekly newsletter); Legislative Report and Burden of Diseases Report (reports); AGA Digest (membership magazine); Digestive Disease Week (annual meeting). [Top] American Hemochromatosis Society, Inc. (AHS)4044 West Lake Mary Boulevard, Unit #104, PMB 416 Mission: To educate and support people with hemochromatosis—genetic iron overload—and to educate the medical community about the latest research on the disease. Materials: Free educational materials; email/telephone patient support; physician referral services; online support groups. [Top] American Liver Foundation (ALF)75 Maiden Lane, Suite 603 Mission: To promote liver health and liver disease prevention. The ALF provides research, education, and advocacy for those affected by liver-related diseases, including hepatitis. Materials: Member newsletters; pamphlets, fact sheets, and videos about liver diseases, transplantation, organ donation, and prevention of liver diseases. [Top] American Motility Society (AMS)45685 Harmony Lane Mission: To promote research and sponsor professional education seminars about gastrointestinal motility topics, including disorders of esophageal, gastric, small intestinal, and colonic function and to sponsor biennial meetings, symposia, and courses. Materials: The Recorder (member newsletter); patient and clinician resources. [Top] American Pancreatic Association (APA)P.O. Box 14906 Mission: To provide a forum for presentation of scientific research related to the pancreas. Materials: Pancreas (journal). [Top] American Porphyria Foundation (APF)4900 Woodway, Suite 780 Mission: To enhance public awareness about porphyria, develop and distribute educational materials for patients and physicians, and support research to improve treatment and lead to a cure. The APF also serves as an advocate to other public, private, and government agencies interested in funding research and educational programs. Materials: Acute Intermittent Porphyria, Porphyria Cutanea Tarda (PCT), ALAD Porphyria (ADP), Hepatoerythropoietic Porphyria (HEP), Hereditary Coproporphyria (HCP), Variegate Porphyria (VP), and Erythropoietic Protoporphyria (EPP) (informational brochures); newsletter. [Top] American Society for Gastrointestinal Endoscopy (ASGE)1520 Kensington Road, Suite 202 Mission: To provide information, training, and practice guidelines about gastrointestinal endoscopic techniques. Materials: Gastrointestinal Endoscopy (journal); Clinical Updates (single-topic publications distributed quarterly); clinical guidelines; member newsletter; patient information brochures. [Top] American Society for Parenteral and Enteral Nutrition (ASPEN)8630 Fenton Street, Suite 412 Mission: To offer information and continuing medical education to professionals involved in the care of parenterally and enterally fed patients. Materials: Journal of Parenteral and Enteral Nutrition and Nutrition in Clinical Practice (journals); member newsletter; nutrition support team resource kit; standards; clinical guidelines; nutrition support clinical pathways. [Top] American Society of Abdominal Surgeons (ASAS)1 East Emerson Street Mission: To sponsor an extensive continuing education program for physicians in the field of abdominal surgery. Materials: Journal of Abdominal Surgery (journal); member newsletter. [Top] American Society of Colon and Rectal Surgeons (ASCRS)85 West Algonquin Road, Suite 550 Mission: To ensure high-quality patient care through research and education for the prevention and management of disorders and diseases of the colon, rectum, and anus. Materials: Diseases of the Colon and Rectum (journal); Practice Parameters; Self-Assessment Program; patient education brochures; annual meeting; strategic plan; Research Foundation grants; listing of board-certified colorectal surgeons; material about colorectal awareness month; residency programs; links to affiliated organizations. [Top] Association of Gastrointestinal Motility Disorders, Inc. (AGMD)12 Roberts Drive 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: AGMD Beacon and AGMD Search and Research (member publications); physician listings and referrals; medical references; educational materials; publication listings and order form; patient information. [Top] Autosomal Recessive Polycystic Kidney Disease & Congenital Hepatic Fibrosis (ARPKD/CHF) AllianceP.O. Box 70 Mission: To create and accelerate interest in and awareness of ARPKD/CHF, specifically through research and education programs, and to effectively communicate effective treatments, therapies, and progress to affected patients, families, and the medical community. Materials: Free ARPKD/CHF Alliance newsletters and educational materials; email listserv; bereavement information and resources; Clinical Care Considerations (managed care guidelines for “informed individualized decision making”); ARPKD/CHF Alliance Repository, a blood bank and data bank for affected people. [Top] Celiac Disease Foundation (CDF)13251 Ventura Boulevard, #1 Mission: To develop awareness and improve the quality of medical and self-care for celiac disease/dermatitis herpetiformis and to provide telephone information and referral services, free information, medical advisory board, and special educational seminars and general meetings. Materials: Guidelines for a Gluten-Free Lifestyle (quarterly newsletter); brochures. [Top] Celiac Sprue Association/USA, Inc. (CSA)P.O. Box 31700 Mission: To provide information and educational materials for people 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: Celiac Sprue, Basics for the Gluten-free Diet, and Gluten-free Commercial Products (information sheets); new-patient packet; On the Celiac Condition (handbook); Lifeline (quarterly newsletter for people with celiac disease); membership forms; chapter information; resource unit information; promotional brochure. [Top] Centers for Disease Control and Prevention (CDC), Division of Viral Hepatitis1600 Clifton Road Mission: To provide the scientific and programmatic foundation for the prevention, control, and elimination of viral hepatitis infections in the United States and assist the international public health community in these activities. Materials: Fact sheets; brochures; videos; slide sets; posters; continuing education credited program. [Top] Children’s Digestive Health and Nutrition Foundation (CDHNF)P.O. Box 6 Mission: To improve the treatment and management of gastrointestinal, hepatobiliary, pancreatic, and nutritional disorders in children and provide information and resources to parents, patients, and medical professionals dealing with these disorders. Materials: Journal of Pediatric Gastroenterology and Nutrition (journal); member newsletter; quick facts; patient brochures; find a pediatric gastroenterologist. [Top] Crohn’s & Colitis Foundation of America (CCFA)386 Park Avenue South, 17th floor Mission: To cure and prevent Crohn’s disease and ulcerative colitis through research and to improve the quality of life of children and adults affected by these digestive diseases through education and support. 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; Foundation Focus (magazine for Foundation supporters). [Top] Cyclic Vomiting Syndrome Association (CVSA)2819 West Highland Boulevard 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, and serve as a resource center for information. Materials: Code V (member newsletter); patient education publications. [Top] Digestive Disease National Coalition (DDNC)507 Capitol Court NE, Suite 200 Mission: To work cooperatively to improve access to and the quality of digestive disease health care to promote the best possible medical outcome and quality of life for current and future patients with digestive diseases. Materials: Brochures; patient education materials. [Top] The Food Allergy & Anaphylaxis Network11781 Lee Highway, Suite 160 Mission: To raise public awareness, provide advocacy and education, and advance research on behalf of all those affected by food allergies and anaphylaxis. Materials: Food Allergy News (bimonthly member newsletter); booklets; videos; cookbooks; special-alert mailings informing members of product information, including ingredient changes, recalls, or packaging mishaps. [Top] Gastro-Intestinal Research Foundation (GIRF)70 East Lake Street, Suite 1015 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: The Gastro-Intestinal Research Foundation Newsletter; The Inside Tract Newsletter; Issues in Women’s Gastrointestinal Health (patient education pamphlet). [Top] Gluten Intolerance Group of North America (GIG)31214 124th Avenue SE Mission: To provide education and support to people with gluten intolerances, including celiac disease, dermatitis herpetiformis, and other gluten sensitivities, so they can live healthy lives. Materials: Cookbooks and general dietary recommendations; fact sheets; GIG Newsletter (member newsletter); videos; information packets for people with celiac disease and dermatitis herpetiformis; dietary guidelines for hospitalized people with celiac disease and dermatitis herpetiformis. [Top] Hepatitis B Coalition1573 Selby Avenue, Suite 234 Mission: To promote hepatitis B vaccination for all children ages 0 to 18 years, 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 Immunization Action Coalition, a branch of the Hepatitis B Coalition, seeks to boost immunization rates and prevent disease by promoting physician, community, and family awareness of and responsibility for appropriate immunization of all children and adults against all vaccine-preventable diseases. Materials: NEEDLE TIPS, Vaccinate Adults, and Vaccinate Women (semiannual publications); IAC Express and HEP Express (free email news service); brochures for patients in a number of languages; print materials for clinic staff; videos; posters; materials for various ethnic populations; adult immunization record card. [Top] Hepatitis B Foundation3805 Old Easton Road Mission: To raise public awareness, provide information and support, fund cure-focused research on hepatitis B, and promote prevention. The Hepatitis B Foundation is a voluntary nonprofit organization. Materials: B Informed, B Connected, and B News You Can Use (newsletters); 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 (brochures); Vaccination; Advice to Parents of Children With HBV and Hot Sheet with current hepatitis B virus research, telephone numbers, and a medical glossary (fact sheets); National Directory of Liver Specialists; Someone You Know (video). [Top] Hepatitis Foundation International (HFI)504 Blick Drive 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; and provide a telephone support network for patients, a listing of physician referrals, 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: Caring for Your Liver; Diagnosis and Treatment of Viral Hepatitis; 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; and Tips on Coping With Chronic Hepatitis (information sheets); additional educational materials; Take Care of Your Liver (poster); Is Your Liver Giving You the Silent Treatment? (brochure); primers for teachers and parents; workbook about the liver for children; audio tutorial CD–ROM; videos; books; Hepatitis Alert and Patient Advocacy Council (newsletters). [Top] International Foundation for Functional Gastrointestinal Disorders (IFFGD)P.O. Box 170864 Mission: To inform, assist, and support people affected by gastrointestinal disorders. The IFFGD is a nonprofit education and research organization. Materials: Participate, Digestive Health Matters, and Digestive Health in Children (quarterly newsletters); educational pamphlets; fact sheets. [Top] Iron Disorders Institute (IDI)2722 Wade Hampton Boulevard, Suite A Mission: To reduce pain, suffering, and unnecessary death due to disorders of iron through education, awareness, and research facilitation. Materials: idIntouch (newsletter); Iron Bytes (online tool for health professionals); Guide to Hemochromatosis, Guide to Anemia, Cooking With Less Iron, and Exposing the Hidden Dangers of Iron (books); Personal Health Profile and Physician’s Reference Chart (forms); idInsight (e-publication). [Top] Iron Overload Diseases Association (IOD)P.O. Box 15857 Mission: To conduct professional education symposia 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 U.S. Food and Drug Administration; encourage research; maintain an international clearinghouse; offer public information through the media; develop chapters and self-help groups; and sponsor annual symposia and IOD Awareness Week. Materials: Overload: An Ironic Disease (booklet); Ironic Blood (bimonthly newsletter); Iron Overload Alert (informational brochure); fact sheets. [Top] National Association For Continence (NAFC)P.O. Box 1019 Mission: To serve as a leading source of education, advocacy, and support to the public and the health profession about the causes, prevention, diagnosis, treatments, and management alternatives for incontinence. Materials: Quality Care (quarterly newsletter); Annual Resource Guide of Continence Products and Services; other educational materials, including books and audiovisuals. [Top] National Diabetes Education Program (NDEP)1 Diabetes Way Mission: To improve the treatment and outcomes for people with diabetes, promote early diagnosis, and prevent or delay the onset of diabetes. Materials: Educational materials about diabetes, available free or at little cost. [Top] National Diabetes Information Clearinghouse (NDIC)1 Information Way Mission: To serve as a diabetes information, education, and referral resource for health professionals and the public. The NDIC is a service of the NIDDK. Materials: Educational materials about diabetes, available free or at little cost; literature searches on a variety of subjects related to diabetes; Diabetes Dateline (e-newsletter). [Top] National Foundation for Celiac Awareness (NFCA)P.O. Box 544 Mission: To raise awareness of celiac disease and funding to advance research, education, and screening and to improve the quality of life of children and adults affected by this autoimmune disease through grant making and direct programming. Materials: Celiac Sprue, A Guide Through the Medicine Cabinet; Gluten-Free Diet: A Comprehensive Resource Guide; Triumph Dining; and NFCA Gluten-Free Resource Guide (books). [Top] National Organization for Rare Disorders (NORD)55 Kenosia Avenue, P.O. Box 1968 Mission: To help people with rare “orphan” diseases and assist the organizations that serve them. The NORD is committed to the identification, treatment, and cure of rare disorders through education, advocacy, research, and service programs. Materials: Orphan Disease Update (member newsletter); NORD Resource Guide; Physicians’ Guide to Rare Diseases; free booklets for physicians about several rare disorders. [Top] National Pancreas Foundation (NPF)364 Boylston Street, 4th Floor Mission: To support the research of diseases of the pancreas and to provide information and humanitarian services to those people who are suffering from such illnesses. Materials: Acute Pancreatitis, Chronic Pancreatitis and Hereditary Pancreatitis, and Common Disorders of the Pancreas (brochures). [Top] North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN)P.O. Box 6 Mission: To be a world leader in advancing the science and clinical practice of pediatric gastroenterology, hepatology, and nutrition in health and disease. Materials: Journal of Pediatric Gastroenterology and Nutrition (journal); member newsletter. [Top] Oley Foundation for Home Parenteral and Enteral Nutrition (HomePEN)214 Hun Memorial, MC–28 Mission: To enrich the lives of those requiring home nutrition support. Materials: LifelineLetter (bimonthly newsletter); Home Parenteral Nutrition Complication Chart and Home Enteral Nutrition (HEN) Complication Chart; video library of annual conference presentations; Choices in Nutrition: Understanding HPN Therapy Options (video); HomePEN Family Network; toll-free consumer networking. [Top] Pediatric/Adolescent Gastroesophageal Reflux Association (PAGER)P.O. Box 486 Mission: To gather and disseminate information about 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; and promote public awareness of the condition and 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 about gastroesophageal reflux and related disorders with descriptions of tests, procedures, medications, and parent-tested home care techniques; quarterly newsletter; brochure about breastfeeding a baby with reflux; Mapping a Gene for Severe Pediatric GER to Chromosome 13q14 (reprint from the Journal of the American Medical Association); booklets about going to school with gastroesophageal reflux disease (GERD), dental care for children with GERD, and feeding disorders and GERD. [Top] Pull-thru Network (PTN)2312 Savoy Street 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 disease, or other fecal incontinence problems; sponsor online discussion groups; maintain a lending library and an article reprint service; and sponsor regional meetings. The PTN is a chapter of the United Ostomy Association. Materials: Pull-thru Network News (quarterly publication); Anorectal Malformations—A Parent’s Guide (brochure). [Top] Reach Out for Youth with Ileitis and Colitis, Inc. (ROFY)84 Northgate Circle Mission: To support families of youngsters with irritable bowel disease (IBD). Founded in 1979, the ROFY has helped hundreds of families cope with the effects of IBD. The self-help group’s goals include providing educational and emotional support to patients and their families and organizing fundraising efforts to promote research into the causes and treatment of IBD. Materials: The Inner Circle (newsletter); The Inside Story (educational brochure); information about accessing services under Section 504 for children with special health care needs (educational plans). [Top] The Society for Surgery of the Alimentary Tract (SSAT)900 Cummings Center, Suite 221–U Mission: To provide a forum for exchange of information among physicians specializing in alimentary tract surgery. Materials: Journal of Gastrointestinal Surgery (journal). [Top] Society of American Gastrointestinal Endoscopic Surgeons (SAGES)11300 West Olympic Boulevard, Suite 600 Mission: To encourage the study and practice of gastrointestinal endoscopy, laparoscopy, and minimal access surgery. Materials: Guidelines; SAGES Manual: Fundamentals of Laparoscopy and GI Endoscopy; position statements; patient education information. [Top] Society of Gastroenterology Nurses and Associates, Inc. (SGNA)401 North Michigan Avenue Mission: To provide members with continuing education opportunities, practice and training guidelines, and information about trends and developments in the field of gastroenterology. Materials: Gastroenterology Nursing (journal); professional instructional and resource materials; SGNA News (member newsletter). [Top] The Simon Foundation for ContinenceP.O. Box 815 Mission: To bring the topic of incontinence out of the closet and remove the associated stigma and provide educational materials to patients, their families, and the health care professionals who provide patient care. Materials: The Informer (quarterly newsletter); Managing Incontinence: A Guide to Living With Loss of Bladder Control (book); additional patient education materials. [Top] TEF-VATER International15301 Grey Fox Road 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: Inside Connections (newsletter); general information; books about coping, working with medical practitioners, and personal stories and accounts of parents who have children with birth defects. [Top] United Network for Organ Sharing (UNOS)P.O. Box 2484 Mission: To advance organ availability and transplantation by uniting and supporting its communities for the benefit of patients through education, technology, and policy development. Materials: UNOS Update (journal); educational materials. [Top] United Ostomy Associations of America, Inc. (UOAA)P.O. Box 66 Mission: To produce and distribute materials about ostomy care and management, offer practical assistance and emotional support to ostomy patients, and sponsor annual youth rally and state and regional conferences for local affiliates. The UOAA has 500 chapters to serve people locally. Materials: Ostomy Quarterly (journal); patient education pamphlets; self-care handbooks; audiovisual program; The Phoenix (magazine). [Top] Weight-control Information Network (WIN)1 WIN Way Mission: To provide the general public, health professionals, the media, and Congress with up-to-date, science-based information about obesity, weight control, physical activity, and related nutritional issues. The WIN also developed the Sisters Together: Move More, Eat Better national initiative to encourage African American women to maintain a healthy weight by becoming more physically active and eating healthier foods. Materials: Fact sheets; brochures; reprints; consensus statements; literature searches on weight control, obesity, and weight-related nutritional disorders; WIN Notes (semiannual newsletter for health professionals). [Top] Wilson’s Disease Association International (WDA)1802 Brookside Drive Mission: To find research and facilitate and promote the identification, education, treatment, and support of patients and other individuals affected by Wilson disease. Materials: The Copper Connection (newsletter); international brochures. [Top] Wound, Ostomy and Continence Nurses Society (WOCN)15000 Commerce Parkway, Suite C Mission: To support its members by promoting educational, clinical, and research opportunities to guide the delivery of health care to individuals with wounds, ostomies, and incontinence. Materials: Journal of Wound, Ostomy and Continence Nursing (journal); Guidelines for Management; WOCN News (member newsletter); other professional, educational, and clinical resource materials. [Top] 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). The NIDDK is part of the National Institutes of Health of 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. The NDDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about digestive diseases. This publication is not copyrighted. The Clearinghouse encourages users of this publication to duplicate and distribute as many copies as desired. May 2009 [Top] |