Resource Links

Connect With Others

Coram and CVS Specialty believe in the power of connecting people living with complex conditions. We’ve collaborated with MyHealthTeams to help make it easy for you to connect with, share and learn from others. Over 320,000 people with conditions such as multiple sclerosis, rheumatoid arthritis, type 2 diabetes and more have joined these communities. We believe well-being improves when people facing the same chronic condition can connect with and learn from each other, ask questions, get referrals and share tips.

Support Organizations

The organizations listed in this directory offer a variety of services and resources for home infusion and tube feeding 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.

Therapy/
Condition
Support Organizations Website
Nutrition 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.

www.eatright.org
Nutrition 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.
aspen@nutr.org
www.nutritioncare.org
Nutrition 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.
digestive.motility@gmail.com
www.agmd-gimotility.org
Nutrition 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.
cdf@celiac.org
www.celiac.org
Nutrition 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.
celiacs@csaceliacs.org
www.csaceliacs.org
ALL 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.
www.cms.hhs.gov

Nutrition 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.
info@ccfa.org
www.ccfa.org
Nutrition 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.
ddnc@hmcw.org
www.ddnc.org
Nutrition Feeding Tube Awareness Foundation
The Feeding Tube Awareness Foundation is a non-profit organization dedicated to pediatric tube feeding. It provides parents with practical knowledge and support from parents who have children that are tube fed. The organization runs the largest online forum on tube feeding in the world, connecting more than 14,000 parents, caregivers and tube feeders in real-time on Facebook. The website is focused on providing parents the information and tools they need to navigate raising a child who is tube fed in all aspects of daily life. The organization founded Feeding Tube Awareness Week to raise positive visibility of tube feeding, so there is greater understanding and acceptance in our communities.
info@feedingtubeawareness.org
www.feedingtubeawareness.org
facebook.com/FeedingTubeAwareness
Nutrition 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.
info@HelpHER.org
www.helpher.org
Nutrition
Infinity Feeding Pump Resources
From Nestlé Healthcare Nutrition, this is a comprehensive resource for clinicians, patients and caregivers. This site allows the visitor to try out the pump’s programming, download support resources and view the Operator’s Manual. There are also videos from real users telling about their experience with the pump.
www.infinityfeedingpump.com
Nutrition 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.
iffgd@iffgd.org
www.iffgd.org
Nutrition Joey Feeding Pump Resources
This is a comprehensive website for clinicians, patients and caregivers from Covidien. The site outlines step by step the programming and features of the Joey pump. The training is available in English, French, Italian and Dutch. The site also contains links to resources such as the operation manual, a troubleshooting guide for the feed only, and feed and flush pump operations.
www.kangaroopumptraining.com
Nutrition Kimberly-Clark MIC-KEY* Feeding Tubes
Kimberly-Clark's website for MIC-KEY* feeding tubes. The site includes real-life stories from feeding tube users and caregivers, everyday use and care tips for feeding tubes, detailed product information, FAQs, and reimbursement/insurance coverage information.
www.mic-key.com
ALL Medicaid
State-by-state descriptions and plans. Provides links to each state's Medicaid website. See also Centers for Medicare & Medicaid Services.
http://www.medicaid.gov
ALL 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.
www.medicare.gov
Nutrition MyTubeFeeding.com
Nestle-sponsored tube feeding resource for adults including information to support their first day home with tube feeding, educational resources and information on pumps and tubing
www.mytubefeeding.com
Nutrition 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.
www.kidney.org
ALL 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.
help@patientadvocate.org
www.patientadvocate.org
Nutrition parENtalk™
parENtalk was developed by Nestle to help parents and caregivers through the tube-feeding journey. The program is intended to help parents and caregivers navigate the changes, both physical and emotional, that they will encounter when learning to care for a child on enteral feeding.
Toll-free: 800.315.9795
www.parentalk.com
Nutrition
Oley Foundation
Independent nonprofit organization that provides information and psychosocial support to consumers on home IV (parenteral) and tube-fed (enteral) nutrition, helping them live fuller, richer lives. Provides newsletter, troubleshooting guides, annual conference, patient-to-patient contact (toll-free calls, online chat forum and email), travel tips, online education/information, equipment exchange program, and video/DVD library. All programs are free of charge for patients and families.
bishopj@mail.amc.edu
www.oley.org
Toll-free:
800.776.OLEY
Tel: 518.262.5079
Fax: 518.262.5528
Nutrition Scleroderma Foundation
Nonprofit foundation offering support, education, research and advocacy.

www.scleroderma.org
Toll-free: 800.722.HOPE
Fax: 978.463.5809
Nutrition Short Bowel Syndrome Foundation
The Short Bowel Syndrome Foundation helps patients, family members and healthcare professionals learn about short bowel syndrome (SBS). Their website explains the causes of SBS, common symptoms, and standard treatments. The site also provides multiple resources that may help a SBS patient gain more control over their condition and regain control of the quality life.
Ajablonski@shortbowelfoundation.org
www.shortbowelfoundation.org
Toll-free: 888.740.1666
Nutrition Stay Connected
Stay Connected is an initiative by GEDSA that will introduce new, safer connectors for tube feeding patients. GEDSA is led by an international group of clinicians, manufacturers, and regulators. This group developed a new standard for connectors for tube feeding and other therapies. The standard makes it difficult for devices used with different therapies to connect to each other. In this way, it helps prevent misconnections. Learn more >
www.stayconnected.org
Nutrition
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.
info@tefvater.org
www.tefvater.org
Tel: 301.952.6837
ALL 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.
info@caregiver.com
www.caregiver.com
Toll-free: 800.829.2734
Fax: 954.893.1779
Nutrition
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.
info@ostomy.org
www.ostomy.org
Toll-free: 800.826.0826
Alpha-1 Alpha-1 Association www.alpha1.org
Alpha-1 Alpha-1 Foundation www.alphaone.org
Alpha-1 Alpha-1 Social Networking www.spiderspun.net
Alpha-1 American Liver Foundation www.liverfoundation.org
Alpha-1 American Lung Association www.lungusa.org
Alpha-1 Baxter Healthcare Corporation www.alpha1health.com
Alpha-1 CSL Behring www.zemaira.com
Alpha-1 Patient Services, Inc. www.patientservicesinc.org
Alpha-1 Second Wind www.2ndwind.org
ALL Social Security www.ssa.gov/disability
Heart Failure American Diabetes Association (ADA)
Nonprofit. Provides education, advocacy, support, and research.
www.diabetes.org
Heart Failure American Heart Association (AHA)
The AHA’s mission is to reduce disability and death from cardiovascular diseases and stroke. Nonprofit with local chapters. Provides education, support groups, and nutritional information.
www.americanheart.org
Heart Failure Centers for Disease Control and Prevention (CDC)
Federal agency that provides statistics, information on diseases, and public health information to prevent and control infectious and chronic diseases.

www.cdc.gov

Heart Failure Heart Failure Society of America (HFSA)
The HFSA represents the first organized effort by heart failure experts from the Americas to provide a forum for all those interested in heart function, heart failure, and congestive heart failure (CHF) research and patient care.
www.hfsa.org
Heart Failure HydroSeal Shower Barrier - Training Video
This video shows you how to safely apply the HydroSeal shower barrier to your IV site or dressing to prevent it from getting wet.
View video
Heart Failure National Heart, Lung and Blood Institute (NHLBI)
The National Heart, Lung, and Blood Institute provides leadership for a national program in diseases of the heart, blood vessels, lung, and blood; blood resources; and sleep disorders.       
www.nhlbi.nih.gov
Heart Failure National Kidney Foundation (NKF)

www.kidney.org
Tel: 212.889.2210

Heart Failure U.S. National Institutes of Health (NIH)
The National Institutes of Health is the steward of medical and behavioral research for the Nation. It is an Agency under the U.S. Department of Health and Human Services. 
www.nih.gov
Transplant American Organ Transplant Association (AOTA)
Nonprofit. Provides fundraising assistance, free travel assistance for those with transplant needs, transplant resources, and pharmacy savings programs.
www.aotaonline.org
Transplant Angel Flight
Nonprofit. Provides free air transportation for those in financial need or in a time-critical, non-emergency situation due to their medical condition.
www.angelflight.com
Transplant Children’s Organ Transplant Association (COTA)
Nonprofit. Provides fundraising assistance for children and young adults needing transplants.
www.cota.org
Transplant National Foundation for Transplants (NFT)
Nonprofit. Provides patient support and network development.
www.transplants.org
Transplant United Network for Organ Sharing (UNOS)
The UNOS is a non-profit scientific and educational organization that administers the nation’s only Organ Procurement and Transplantation Network (OPTN). UNOS brings together medicine, science, public policy and technology to facilitate every organ transplant performed in the U.S.

www.unos.org
www.transplantliving.org (patient education)

CVS Health    CVS Specialty      

Panama City – HHA # 299993869 | Pensacola – HHA # 299993870 | Jacksonville – HHA # 20222096 | Ocala – HHA # 299994092 | Orlando – HHA # 299991256 | Tampa – HHA # 202960961 | Miramar – HHA # 20290096

© Coram LLC