Resource Links

The organizations listed in this directory offer a variety of services and resources for home nutrition consumers and caregivers.
Please note that some organizations may charge a fee for access to services. This listing is not an endorsement of these organizations, or information they may disseminate. We strongly suggest you discuss any information you receive from these organizations with a qualified professional before making any changes in your healthcare, insurance coverage or home care provider.
A | C | D | G | H | I | M | N | O | S | T | U
American Dietetic Association (ADA)
World's largest organization of food and nutrition professionals, committed to improving the nation's health and advancing the profession of dietetics through research, education and advocacy.
120 South Riverside Plaza, Suite 2000, Chicago, Illinois 60606
Toll-free: 800.877.1600
Web: www.eatright.org
American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.)
Professional organization dedicated to improving patient care by advancing the science and practice of nutrition support therapy. Provides news articles, patient education materials and volunteer opportunities.
8630 Fenton Street, Suite 412, Silver Spring, Maryland 20910
Tel: 301.587.6315 Fax: 301.587.2365
Email: aspen@nutr.org
Web: www.nutritioncare.org
Association of Gastrointestinal Motility Disorders, Inc. (AGMD)
Nonprofit international organization which serves as an integral educational resource concerning
digestive motility diseases and disorders. AGMD also functions as an important information
base for members of the medical and scientific communities, and provides a forum for patients
suffering from digestive motility diseases and disorders. Provides patient information and
support, educational materials, networking, online resources, physician referrals and symposia/
conferences.
12 Roberts Drive Bedford, Massachusetts 01730
Tel: 781.275.1300 Fax: 781.275.1304
Email: digestive.motility@gmail.com
Web: www.agmd-gimotility.org
Celiac Disease Foundation (CDF)
Nonprofit organization that strives to promote awareness and build a supportive community for
patients with celiac disease, their families and healthcare professionals. CDF is actively involved in advocating for patient concerns and networking with other national and international organizations. Provides brochures, news archives, research articles, events and local support chapters.
13251 Ventura Boulevard, #1, Studio City, California 91604
Tel: 818.990.2354 Fax: 818.990.2379
Email: cdf@celiac.org
Web: www.celiac.org
Celiac Sprue Association/USA, Inc.
Worldwide member-based nonprofit organization dedicated to helping individuals with celiac disease and dermatitis herpetiformis through education, research and support. Provides brochures, news archives, research articles, support, education, research, local support chapters and events.
P.O. Box 31700, Omaha, Nebraska 68131
Tel: 877.CAS.4CSA (877.272.4272) Fax: 402.558.1347
Email: celiacs@csaceliacs.org
Web: www.csaceliacs.org
Centers for Medicare & Medicaid Services
Official U.S. government website of the U.S. Department of Health and Human Services and the Centers for Medicare & Medicaid Services. Provides detailed information about Medicare and Medicaid. See also Medicare and Medicaid.
Web: www.cms.hhs.gov
Crohn's & Colitis Foundation of America, Inc. (CCFA)
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. Provides patient education, instructional materials, resource guides, online forum, local chapters and events.
386 Park Avenue South, 17th floor, New York, New York 10016
Toll-free: 800.932.2423 Tel: 212.685.3440 Fax: 402.558.1347
Email: info@ccfa.org
Web: www.ccfa.org
CoramRx Specialy Pharmacy Services
CoramRx can help you manage complex therapies and specialty medication by providing comprehensive therapy-management programs, as well as injectable, infusible (IV) and oral medications. CoramRx offers specialty products covering many disease states and therapies, including Crohn's disease, oncology, and HIV/AIDS.
Web: coramrx.com
Digestive Disease National Coalition (DDNC)
Nonprofit advocacy organization comprised of major national voluntary and professional societies concerned with digestive diseases. The DDNC focuses on improving public policy related to digestive diseases and increasing public awareness with respect to the many diseases of the digestive system.
507 Capitol Court, NE Suite 200, Washington, D.C. 20002
Tel: 202.544.7497 Fax: 202.546.7105
Email: ddnc@hmcw.org
Web: www.ddnc.org
Great Escapes™ Travel Program
Apria and Coram's Great Escapes Travel Program takes the worry out of traveling on nutrition support. Available in all 50 states, our Great Escapes program provides comprehensive travel support services. Great Escapes enables our consumers to safely continue their TPN and tube feeding therapies while they travel, whether their trip takes them across the U.S. or around the globe!
Tel: 877.WeNourish (877.936.6874)
Web: WeNourish.com/travel
HER Foundation – Hyperemesis Education & Research
The Hyperemesis Education & Research (HER) Foundation provides education and support for mothers suffering from hyperemesis gravidarum and those who care for them.
932 Edwards Ferry Rd, #23, Leesburg, VA 20176
Fax: 703.935.2369
Email: info@HelpHER.org
Web: www.hyperemesis.org
International Foundation for Functional Gastrointestinal Disorders (IFFGD)
Nonprofit education and research organization whose mission is to inform, assist and support people affected by gastrointestinal disorders.
P.O. Box 170864, Milwaukee, Wisconsin 53217
Toll-free: 888.964.2001 Tel: 414.964.1799 Fax: 414.964.7176
Email: iffgd@iffgd.org
Web: www.iffgd.org
Medicaid
State-by-state descriptions and plans. Provides links to each state's Medicaid website. See also Centers for Medicare & Medicaid Services.
Web: http://64.82.65.67/medicaid/states.html
Medicare
Official U.S. government site for Medicare beneficiaries. Provides information on various aspects of Medicare, including prescription drug plans and health plans; eligibility requirements; summary of rights and benefits; filing claims, appeals and grievances. See also Centers for Medicare & Medicaid Services.
Web: www.medicare.gov
MedWatch
Official U.S. government website of the Food and Drug Administration. MedWatch is an FDA program which allows healthcare professionals and consumers to report serious problems that they suspect are associated with the drugs and medical devices they prescribe, dispense or use.
Web: www.fda.gov/medwatch
Memorial Hermann Transplant Center
Innovative procedures and groundbreaking advances make Memorial Hermann's Transplant Center a leader in transplant medicine. This internationally renowned program has consistently developed and implemented therapy that has become recognized as the standard of care. The Intestinal Rehabilitation & Transplant Center (IRTC) at the Texas Liver Center provides the full gamut of care for patients with gastrointestinal disorders requiring chronic, outpatient total parenteral nutritional (TPN) therapy.
6410 Fannin, Suite 370, Houston, Texas 77030
Toll-free: 800.98LIVER (800.985.4837) Tel: 713.704.6800 Fax: 713.704.6616
Web: Memorial Hermann Transplant Center
| IRTC
National Kidney Foundation
The website provides information about patients with kidney disease including information on the National Kidney Foundation Disease Outcomes Quality Initiative (NKF KDOQI) and information and guidelines on nutrition and chronic kidney failure. The National Kidney Foundation is dedicated to preventing kidney disease and to improving the health of those affected by kidney disease.
30 East 33rd Street, New York, NY 10016
Toll-free: 800.622.9010 Tel: 212.889.2210 Fax: 212.689.9261
Web: www.kidney.org
Patient Advocate Foundation (PAF)
National nonprofit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability relative to their diagnosis of life-threatening or debilitating diseases. Provides patient advocacy, Co-Pay Relief program, Scholarships for Survivors program, national financial resources database, publications, education resources and a news archive.
700 Thimble Shoals Boulevard, Suite 200, Newport News, Virginia 23606
Toll-free: 800.532.5274 Fax: 757.873.8999
Email: help@patientadvocate.org
Web: www.patientadvocate.org
Oley Foundation
Independent nonprofit organization that provides information and psychosocial support to consumers of home parenteral and enteral nutrition, helping them live fuller, richer lives. Provides newsletter, charts, brochures, travel/hospital pack, travel tips, toll-free consumer networking, video/DVD library, online community forum, regional support groups, annual conference and events.
214 Hun Memorial, MC-28, Albany Medical Center, Albany, New York 12208
Toll-free: 800.776.OLEY Tel: 518.262.5079 Fax: 518.262.5528
Email: info@oley.org
Web: www.oley.org
Scleroderma Foundation
Nonprofit foundation offering support, education, research and advocacy.
300 Rosewood Drive, Suite 105, Danvers, Massachussetts 01923
Toll-free: 800.722.HOPE Fax: 978.463.5809
Web: www.scleroderma.org
Tef Vater Support Network
Offers support and encouragement to parents of children with esophageal atresia,
tracheo-esophageal fistula and the VATER. Aims to bring current information to parents
and the medical community. Newsletter, information and referrals and phone support.
15301 Grey Fox Road, Upper Marlboro, Maryland 20772
Tel: 301.952.6837
Email: info@tefvater.org
Web: www.tefvater.org
Today's Caregiver
Company dedicated to the concerns and issues of family and professional caregivers. Caregiver Media Group and all of its products are developed for caregivers, about caregivers and by caregivers. Provides information, news articles, caregiver support, newsletter, magazine, conferences, discussion lists, chat rooms, recipes and an online store.
3005 Greene Street, Hollywood, Florida 33020
Toll-free: 800.829.2734 Fax: 954.893.1779
Email: info@caregiver.com
Web: www.caregiver.com
Travel Program — Great Escapes™
Apria and Coram's Great Escapes Travel Program takes the worry out of traveling on nutrition support. Available in all 50 states, our Great Escapes program provides comprehensive travel support services. Great Escapes enables our consumers to safely continue their TPN and tube feeding therapies while they travel, whether their trip takes them across the U.S. or around the globe!
Tel: 877.WeNourish (877.936.6874)
Web: WeNourish.com/travel
United Ostomy Associations of America, Inc. (UOAA)
Association of affiliated, nonprofit support groups who are committed to the improvement of the quality of life of people who have, or will have, an intestinal or urinary diversion. Provides discussion boards, patient handbooks, brochures, fact sheets, magazine subscription, advocacy, support groups, conferences and events.
P.O. Box 66 Fairview, Tennessee 37062
Toll-free: 800.826.0826
Email: info@uoaa.org
Web: www.uoaa.org

