COVID-19 Update
This is the COVID-19 site for Option Care Health, an infusion provider for Carefirst. https://optioncarehealth.com/coronavirus
They also have par infusion sites if someone asks where they can go other than o/p hospital. Of course, they need to get approval from CVS
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. Note: CVS Health is an investor in MyHealth Teams. CVS Health and MyHealthTeams have partnered to offer additional help and support for those living with many chronic conditions.
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 = Alpha-1
Alpha-1 Association www.alpha1.org
Alpha-1 Foundation www.alphaone.org
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
Nutrition Resources
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
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
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
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
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
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 - 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)
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)
EDUCATION/RESOURCES
What Is Home Infusion Therapy? Infusion therapy is when medication is delivered through a needle or catheter into a vein. Home infusion therapy is when a patient receives this therapy outside the hospital or clinical setting.
Feeding Tube Awareness Foundation http://www.feedingtubeawareness.org/ 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.
Infinity Feeding Pump Resources http://www.infinityfeedingpump.com/ 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.
International Foundation for Functional Gastrointestinal Disorders (IFFGD) http://www.iffgd.org/
Nonprofit education and research organization whose mission is to inform, assist and support people affected by gastrointestinal disorders.
Joey Feeding Pump Resources http://www.kangaroopumptraining.com/ 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.
Kimberly-Clark MIC-KEY* Feeding Tubes http://www.mic-key.com/ 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.
MyTubeFeeding.com http://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
Nestle parENtalk™ http://www.parentalk.com/ 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
Oley Foundation http://www.oley.org/ 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.