Supporting and educating patients and families on the intestinal failure,
intestinal rehabilitation and intestinal and multivisceral transplantation journey.
Helpful Websites
For All Ages
Website Categories
Click to go directly to that particular section of the page.
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Transplant Related: Transplant organizations and resources.
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Digestive Disease Specific: A variety of organizations for the education and advocacy of numerous digestive diseases.
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Other Useful Medical: Helpful educational content on general medical conditions as well as rare diseases.
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Financial Resources: A listing of organizations that can help with fundraising and other forms of financial assistance.
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Medication Assistance Programs: Listing of prescription medication assistance programs.
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Phone Applications: Listing of phone applications to help with your medical journey.
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Transplant Related
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American Society of Transplantation: Power2Save
Purpose: Transplant education and research for general transplant community.
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Association for Multicultural Affairs in Transplantation
Purpose: Education on the importance of donation and transplant in multicultural communities.
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Association of Organ Procurement Organizations (AOPOs)
Purpose: Education amongst the transplant community.
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Purpose: Information and resources for transplant recipients, families, and donor families.
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Purpose: Sign-Up for organ donation and learn about organ donation. Great educational resources about general organ donation.
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Organ Procurement and Transplantation Network (OPTN)
Purpose: Transplant information database contains all national data on the candidate waiting list, organ donation and matching, and transplantation.
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Purpose: Ongoing Support and resources for those affected by liver failure.
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Scientific Registry of Transplant Recipients (SRTR)
Purpose: Important transplant and donation data.
2022 Report: https://srtr.transplant.hrsa.gov/annual_reports/2022/Intestine.aspx
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SRTR Transplant Centers Search
Purpose: Search for all transplant centers in the United States.
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Purpose: Patient education.
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Purpose: An online community for transplant recipients, care partners, donors, and transplantation experts.
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Purpose: Transplant awareness. The Foundation organizes the Transplant Games of America and publishes the TransplantNATION magazine.
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Transplant Recipients International Organization (TRIO)
Purpose: Information and resources for transplant recipients, families, and donor families.
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United Network for Organ Sharing (UNOS)
Purpose: National agency that oversees organ transplant.
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Digestive Disease-Specific Organizations and Websites
Purpose: Liver education and advocacy.
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Association of Gastrointestinal Motility Disorders (AGMD)
Purpose: Education and advocacy for individuals with motility digestive disease and disorders.
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American Neurogastroenterology and Motility Society
Purpose: Multidisciplinary society leading the field of neurogastroenterology by fostering excellence in research, education, training, and patient care.
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American Society of Anesthesiologists (ASA)
Purpose: Education on pain management and surgical anesthesia.
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Crohn’s and Colitis Foundation
Purpose: Education and advocacy for Crohn's disease. Online support community if you are struggling with Crohns's or ulcerative colitis.
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Crohn's and Colitis Foundation of Canada
Purpose: Education and advocacy for Crohn's disease.
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Purpose: To raise awareness about tube feeding and oral aversion therapy.
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Purpose: Organization that functions to help provide optimal care for children with pediatric feeding disorders through advocacy, education, support, and research.
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GI Society: Canadian Society of Intestinal Research
Purpose: Education and advocacy for digestive disease conditions. Website with wealth of information about gastrointestinal conditions.
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Gastroparesis Patient Association for Cures and Treatments (G-PACT)
Purpose: Dedicated to increasing awareness of Gastroparesis (GP), Chronic Intestinal Pseudo-obstruction (CIP), and Colonic Inertia (CI).
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International Foundation for Gastrointestinal Disorders
Purpose: Education and research for gastrointestinal disorders. Has specific information on motility disorders, gastroparesis, kids GI disorders, and more.
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National Institute of Health: Digestive Disease Information
Purpose: NIH information on various digestive disease conditions.
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Purpose: The official publication of United Ostomy Associations of America. Get answers to the challenges of living with a colostomy, ileostomy, or urostomy.
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Purpose: Striving to enrich the lives of those living with home intravenous nutrition and tube feeding through education, advocacy, and networking.
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Short Bowel Syndrome Foundation
Purpose: Education and advocacy for individuals with short bowel syndrome.
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Short Bowel Syndrome Cure Project
Purpose: Research and advocacy for individuals suffering with short bowel syndrome and intestinal failure.
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Purpose: Website sponsored by Takeda, provides educational information on short bowel syndrome.
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Purpose: Nonprofit organization focused on educating consumers on sleep health. They have developed a Crohn's specific sleep resource, amongst other helpful information.
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United Ostomy Associations of America (UOAA)
Purpose: Education and support for individuals living with ostomies. Online support community available.
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Other Useful Medical Sites
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Academy of Nutrition and Dietetics
Purpose: Education about food and nutrition.
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Food Allergy Research and Education
Purpose: Research, education, and advocacy for individuals suffering from food allergies.
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Genetic and Rare Diseases Information Center
Purpose: Education, research, and resources on rare diseases.
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National Organization for Rare Disorders (NORD)
Purpose: Education, research, and advocacy for individuals with rare disease.
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University of Virginia Nutrition: Many useful downloads on different diets for different medical conditions including short bowel syndrome.
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Financial Resources
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Nationwide league of humanitarian flying organizations whose volunteer pilots fly for health care, patient transport, etc. May provide free or low-cost flights for medical evaluations and surgery for living donors and recipients.
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American Organ Transplant Association
This organization helps patients find free transportation to and from transplant center.
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Bedside-to-Bedside transportation for transplant recipients. They are able to arrange transport of any age patient, beginning with infant and pediatric all the way through patients at an advanced age.
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Children’s Organ Transplant Association (COTA)
Helps kids in need of organ transplant and helps families fundraise to offset transplant costs.
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Provides access to dental care & education for people who cannot afford it. Restrictions: permanent disability, or 65+, or medically fragile. Flagship program: Donated Dental Services (DDS) dental care is provided through network of 15,000 volunteer dentists & 3,600 volunteer labs.
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Friends of Disabled Adults and Children (FODAC)
Purpose: Help to supply those in need with durable medical equipment (DME) such as wheelchairs.
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Supports community-based fundraising for unmet medical & related expenses due to cell and organ transplants and other illnesses and injuries.
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Helps people financially with copays, coinsurance, and premiums for medical treatment they are unable to afford. Goal is to give health care to people, even if they can’t afford it.
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National Foundation for Transplants:
NFT helps organ and tissue transplant candidates and recipients overcome the financial challenges associated with transplantation. NFT offers assistance through fundraising and grant programs for transplant-related costs not covered by public or private insurance.
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For patients running low on funds – must be insured and income level must fall below 400% of Federal Poverty Level.
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Patient AirLift Services (PALS)
Nonprofit that arranges FREE flights for those in need of medical diagnosis or treatment; volunteer pilots use their own or rented aircrafts.
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Transplant Recipients International Organization (TRIO)/ United Airlines Travel Program
The TRIO/United Airlines Travel Program provides for transplant recipients, candidates, living donors and care-givers cost-free air transportation when travel is transplant-related.
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Medication Assistance Programs
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Prescription savings card.
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Medication Assistance Programs
Genetech Access to Care Foundation (GATCF): Helps people whose health care plan doesn’t pay for their medicine. Qualified patients receive medication free of charge. Medications of interest: Rituximab, Valcyte, Cellcept.
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Novartis Patient Assistance Program
The Patient Assistance Foundation provides assistance to patients experiencing hardship and do not have third-party coverage for medication. Medications of interest: Cyclosporine, Reclast.
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Help patients find savings on medications.
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Search for prescription coupons for medications.
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The makers of Prograf, Astellas, have a prograf co-pay card that you may qualify for. With it, eligible patients with commercial prescription insurance may pay as little as $0 per prescription, for savings up to $3000.
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Help people enroll in the programs by the manufacturers.
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Website that is a comprehensive directory of patient assistance programs. Search for a medication and the directory will list the available assistance programs for the particular medication. Ex: Enter tacrolimus to see search results for an online application to apply for assistance with getting the med. Both a patient section and healthcare professional section.
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Access to affordable meds. Non-profit pharmacy.
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Prescription savings card.
Helpful Phone Applications
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AlloCare is a phone application created by CareDx that can help monitor all your vital health metrics including medications, tracking your fluids, blood pressure, steps, and mood—all in one place. The applications also has helpful resource articles and new features updated frequently.
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Learn about and track your gastrointestinal symptoms. Has helpful videos within the app.
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