- Financial Support
- Clothing Assistance - Navigate to Glossary "C"
Dental Financial Assistance - Navigate to Glossary"D"
Energy Assistance/Utilities - Contact the Dept of Social Services and Core Service Agency
Financial Aid/Financial Assistance - Navigate to Glossary "F"
Housing/Rent Assistance - Navigate to Glossary "H"
Medical Bills Assistance - Navigate to Glossary "M"
Medical - Condition Specific Co-Pays - Navigate to Glossary "M"
Prescription Co-Pays - Navigate to Glossary "P"
Transportation Assistance - Navigate to Glossary "T" - Food Supplement Program for Maryland Residents
- County: www.dhr.state.md.us/county/all
See accordion below for state resources
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.
Assistive Technology Government Loan Program http://mdod.maryland.gov/mdtap/Pages/AT-Financial-Loan-Program.aspx
Burial Financial Assistance Final Farewell 215-870-8110 http://www.finalfarewell.org/home Population served: Families in the US whose child under the age of 18, or dependent mentally and physically handicapped adult child, has passed away.
Mission: To provide financial assistance, advice and guidance to grieving families from all religions and backgrounds so they may provide an affordable and decent funeral.
DC Burial Assistance http://dhs.dc.gov/service/burial-assistance
County: contact the Department of Social Services and Core Service Agency for a specific county and ask about burial assistance.
Cash TANF Temporary Assistance for Needy Families - Washington, DC https://dhs.dc.gov/service/whats-new-tanf TANF provides temporary cash assistance and work to needy District families with dependent children.
Child Care Subsidy 1-866-243-8796 http://msde.maryland.gov/MSDE/divisions/child_care/subsidy/ The purpose of the Child Care Subsidy (CCS) Program is to provide financial assistance with child care costs to eligible working families through Child Care Subsidy Center.
The 211 Answers, Please! DC (202) 463-6211 http://www.211metrodc.org/find-services This program links District residents with essential human needs for food, shelter, financial assistance, and healthcare.
Access information 24-hours a day, seven days a week.
Emergency Rental Assistance Washington, DC
https://dhs.dc.gov/service/emergency-rental-assistance-program
Owe back rent? Facing Eviction? Emergency Rental Assistance may be able to help.
LGBTQ - AARP's Pride Homepage for Personal Financial Assistance http://www.aarp.org/relationships/friends-family/aarp-pride.html?cmp=RDRCT-PRID_MAY10_011 This is AARP's online home for the lesbian, gay, bisexual and transgender (LGBT) community.
The page is designed to spotlight articles on news, personal finance, relationships, travel and other topics of concern to older gay Americans, and their family and friends.
County: contact the Department of Social Services and Core Service Agency for a specific county for available programs.
Clothing Assistance - Please refer to Glossary "C"
Dental Financial Assistance - Please refer to Glossary"D"
Energy Assistance/Utilities - contact the Department of Social Services and Core Service Agency for a specific county for available programs.
Financial Aid/Financial Assistance - Please refer to Glossary "F"
Food - Please refer to Glossary "F"
Housing/Rent - Please refer to Glossary "H"
Medical Bills - Please refer to Glossary "M"
Medical - Condition Specific Co-Pays - Please refer to Glossary "M"
Prescription Co-Pays: Please refer to Glossary "P"
Transportation - Please refer to Glossary "T"
My Health Apps -> Aggregate Source of Apps and User Reviews
http://myhealthapps.net/
Health App Reviewers - myhealthapps.net is made possible by patients, carers and patient groups who recommend and review apps.
Reviews - The reviews on this site are independent, and volunteered by patient groups, patients and carers.
MyFitnessPal
Calorie Counter & Diet Tracker FitnessPal's food database is the largest around, with over 5 million foods. Customize recipes and view your calories.
iPhone https://itunes.apple.com/us/app/calorie-counter-diet-tracker/id341232718
Android https://play.google.com/store/apps/details?id=com.myfitnesspal.android
MyNetDiary
Track up to 45 micronutrients, and multiple meal and snack times. Inputting your food is easy with flexible serving sizes, a barcode scanner, and the ability to take a photo of your food and have it added to the database. You can also get daily advice and analysis.
iPhone https://itunes.apple.com/us/app/calorie-counter-food-diary/id287529757
Android https://play.google.com/store/apps/details?id=com.fourtechnologies.mynetdiary.ad
Lose It!
Goal-motivated folks will likely find Lose It! to be a worthwhile download. This weight loss app lets you set goals for your weight, body fat, and even sleep, hydration, daily exercise, body measurements, and nutrients. You can also track your daily food intake and activity level. We like the barcode scanner that allows you to quickly input a new food into the database.
iPhone https://itunes.apple.com/us/app/lose-it!-weight-loss-program/id297368629
Android https://play.google.com/store/apps/details?id=com.fitnow.loseit
Noom Coach
Need help staying focused on your nutrition goals? This app gives you something to focus on each day, like making sure you drink six glasses of water. You can also communicate with a support group and access tips and daily motivation.
iPhone https://itunes.apple.com/us/app/noom-coach-weight-loss/id634598719
Android https://play.google.com/store/apps/details?id=com.wsl.noom&hl=en
*Encourage member to consult PCP first before beginning an exercise regimen
Discover Accessible Fitness http://www.nchpad.org/discoverfitness/index.html This booklet is designed to serve as a wheelchair user's guide for using fitness equipment. Provided by the https://www.nchpad.org/
Exercise for Cancer Patients http://fitstar.com/ Online exercise videos or on demand exercise videos via their cable provider
Fit2Me https://fit2me.com Your FREE personal healthy lifestyle coach (online tool) Type 2 Diabetes, High Cholesterol, High Blood Pressure, High Triglycerides, and Heart Attack.
Fitness Partners (Women Only): 2 Unstoppable https://2unstoppable.org/
#GoRedGetFit Quarterly Health & Fitness Challenge https://www.goredforwomen.org/goredgetfit/
Exercise & Aging 125 pages https://order.nia.nih.gov/sites/default/files/2018-04/nia-exercise-guide.pdf
Silver Sneakers Fitness Locations https://www.silversneakers.com/tools/fitness-locations and https://www.silversneakers.com/learn/community-fitness/
Sit and Be Fit YouTube Videos http://www.youtube.com/watch?v=36TeLrvRx2k and http://www.youtube.com/watch?v=E696GThIOhc
Fitness Activities in DC https://www.activelifedc.com/
Fitness Interactive Tools http://washington.dc.networkofcare.org/mh/library/article.aspx?hwid=tu6657
Addtional resources available:
Glossary "D" for dietician/nutritionists
Glossary "H" for healthy eating/heart health
Glossary "N" for nutrition
Glossary "W" for weight loss
Maryland 211 Food Pantries Call: 211 https://211md.org/food-pantries Online search tool
Maryland Food Bank 410-737-8282 Call for Referrals https://mdfoodbank.org/need-food/
Maryland Women, Infant, Children Program (WIC) www.mdwic.org Specific criteria must be met.
Senior Farmers' Market Nutrition Program www.dhr.maryland.gov/food-supplement-program/ Specific criteria must be met.
Food Supplement Program from Maryland Department of Human Services http://dhr.maryland.gov/food-supplement-program The Supplemental Nutrition Assistance Program (SNAP), called the Food Supplement Program (FSP) in Maryland, formerly known as Food Stamps, helps low-income households buy the food they need.
Temporary Cash Assistance (TCA) 410-996-0100 https://www.marylandsail.org Provides cash assistance to needy families with dependent children.
The Emergency Food Assistance Program https://www.fns.usda.gov/tefap/emergency-food-assistance-program Specific criteria must be met.
Feeding America Online search tool https://www.feedingamerica.org/find-your-local-foodbank
Meals on Wheels http://www.mealsonwheelsamerica.org/ Specific criteria must be met
No Kid Hungry National Program https://www.nokidhungry.org/ (based out of Washington, DC) All across the country, schools and community groups run summer meals sites where kids can eat breakfast and lunch for free. No Kid Hungry helps local organizations launch and operate these sites, and we also help fund needed equipment like mobile meals trucks.
Maryland No Kid Hungry http://md.nokidhungry.org/
Virginia No Kid Hungry http://va.nokidhungry.org/
1. Mobile Meal Trucks: https://vimeo.com/254329873
2. Summer Meals Texting Service: https://www.nokidhungry.org/blog/can-kids-really-get-free-meals-just-sending-text-message Parents, grandparents and caregivers can text ‘FOOD’ to 877-877 to find free summer meals sites in their neighborhoods.
3. Family Nutrition Program: Though schools and community programs are often the best way to reach older children, to help the youngest kids, we need to help their parents. Through our family nutrition education program, the Cooking Matters campaign, we’re helping parents and caregivers learn how to shop for and cook healthy, affordable meals. https://cookingmatters.org/?_ga=2.7914353.2123301336.1560781457-71787278.1554825914
Why Hunger Hotline 1-866-3-HUNGRY Call for referrals http://www.whyhunger.org/findfood
Why Hunger Hotline (Spanish Line) 1-877-8-HAMBRE Call for referrals