Resources
5 Essential Questions to Ask Your Transplant Team
These 5 Questions will impress your transplant or living donor team. They may also give you a clearer picture of what to do next.
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American Society of Transplantation (AST): (ph: 856-439-9986) https://www.myast.org
While this is mainly for transplant professionals, they have many informative webinars for transplant recipients, living donors and caregivers. They also have a free “Caregiver Toolkit” and
“Living Donor Toolkit.” AST also created “Find Your Voice Toolkit” made specifically for Black communities.
American Transplant Foundation: https://www.americantransplantfoundation.org
Provides educational, emotional and financial support for living donors, transplant patients and their families across the country with primary focus in Colorado. They share lots of great patient educational materials per organ as well.
Donate Life America: (ph: 804-377-3580) https://donatelife.net
Donate Life helps educate you about everything related to organ/tissue/cornea donation including these types of donations: deceased, living, pediatric and vascularized composite allografts. You can also register to become a donor on their website!
Organ Procurement & Transplantation Network (OPTN): (ph: 888-894-6361) https://optn.transplant.hrsa.gov
OPTN operates under contract with the U.S. Department of Health and Human Services by UNOS. OPTN has a data base where you can search different statistics of every transplant center in the USA. They also have patient resources to provide more information about transplant and living donation.
Scientific Registry of Transplant Recipients (SRTR): (ph: 877-970-7787) https://www.srtr.org
SRTR draws data collected by OPTN regarding transplant programs and organ procurement organizations to provide a great deal of information about transplant programs and their results. This is a helpful website for you to see more about the outcomes at the transplant center you are working with or wanting to work with.
Transplant Pregnancy Registry International (TPRI): (ph: 877-955-6877) https://www.transplantpregnancyregistry.org
An ongoing study of outcomes of pregnancies in female transplant recipients, and those fathered by male transplant recipients. They are always welcoming new study participants.
Transplant Recipients International Organization (TRIO): (ph: 813-800-8746) www.trioweb.org
Provides education, advocacy and peer support for transplant patients with active chapters across the United States and Japan.
United Network for Organ Sharing (UNOS): (ph: 800-292-9548) www.unos.org
UNOS is contracted by the federal government to oversee organ procurement along with transplant programs in the USA. You can find info on their website that provides updates and transplant and donation information to patients, help to find a local support group through their Transplant Living services (https://transplantliving.org) and have free webinars.
American Association of Kidney Patients (ph: 800-749-2257) https://aakp.org
An organization founded by kidney patients for kidney patients to educate and improve the health and well-being of chronic kidney disease patients, those on dialysis, and transplant recipients.
American Kidney Fund: https://www.kidneyfund.org
Provides education, advocacy and financial grants (including the AKF HIPP program that can pay for your insurance premium while on dialysis and for a limited time after transplant if qualified).
IHateDialysis www.ihatedialysis.com
Patient to patient forum about the dialysis experience.
Kidney Patient Guide www.kidneypatientguide.org.uk
Includes information on the physical aspects of kidney failure, including how the kidneys function, what happens when they do not, the treatments available, and the emotional, social, and financial implications of kidney failure.
Kidney School www.kidneyschool.org
An online educational feature containing a series of 20-minute interactive modules (available in Spanish and English) encouraging patients to take control of their own healthcare and set goals in a Personal Action Plan.
National Kidney Federation:
https://www.kidney.org.uk/lets-get-active-exercise-for-kidney-patients
United Kingdom created exercise recommendations for kidney patients.
National Kidney Foundation: (ph: 855-653-2273) https://www.kidney.org
Full scope organization that provides SO MANY fabulous things to kidney patients from peer-to-peer support, education, advocacy and much more. Local chapters may have additional support like financial assistance available.
National Pancreas Foundation www.pancreas.org
Current information about illnesses related to the pancreas.
Renal Support Network (ph: 866-903-1728) www.RSNhope.org
Provides non-medical services to help patients with chronic kidney disease through awareness, advocacy and education. Peer-to Peer Support HOPE Line: (800) 579-1970.
American Diabetes Association (ADA) www.diabetes.org
American Society of Hypertension (ASH) http://www.ash-us.org
Alport Syndrome Foundation www.alportsyndrome.org
Nephrogenic Diabetes Insipidus Foundation (NDIF) www.ndif.org
Polycystic Kidney Disease Foundation www.pkdcure.org
American Liver Foundation: https://liverfoundation.org
Provides current news and info for many different liver-related topics to help patients, friends and families impacted by liver disease.
How does my doctor figure out my Model for End Stage Liver Disease (MELD) score?
https://optn.transplant.hrsa.gov/data/allocation-calculators/meld-calculator
University of California San Francisco FAQ: Getting a Liver Transplant:
https://www.ucsfhealth.org/education/faq-getting-a-liver-transplant
Patients frequently asked questions answered.
Johns Hopkins Medicine: Liver Transplant:
https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/liver-transplant
General educational overview including why someone would need a liver transplant, risks of liver transplant, getting ready for liver transplant, what happens after transplant.
Mayo Clinic: Liver Transplant:
https://www.mayoclinic.org/tests-procedures/liver-transplant/about/pac-20384842
General educational overview including why liver transplant is done, risks, how you prepare, what you can expect.
Alpha-1 Foundation: https://alpha1.org
Supporting people living with Alpha-1 through education. You can search Alpha-1 specialists near you and find an Alpha-1 Foundation Support Group to join.
American Thoracic Society (ATS): (ph: 212-315-8600) https://site.thoracic.org
Provides education and patient resources (https://site.thoracic.org/advocacy-patients/patient-resources) with the goal of advancing research, patient care and public health in pulmonary disease, critical illness and sleep disorders. They also have A-Z fact sheets: https://site.thoracic.org/advocacy-patients/patient-resources/fact-sheets-a-z
Cystic Fibrosis Foundation: (ph: 301-951-4422) https://www.cff.org
Helping people with cystic fibrosis with support, education and research.
Lung Transplant Foundation: https://lungtransplantfoundation.org
Offers peer-to-peer mentoring, provides education and supports research related to lung transplant.
Pulmonary Fibrosis Foundation: (ph: 844-825-5733) https://www.pulmonaryfibrosis.org
Provides patient and caregiver education along with medical and support resources related to pulmonary fibrosis.
Second Wind Lung Transplant Association, Inc.: https://www.2ndwind.org
Provides support, advocacy, education, information and guidance for lung transplant candidates/recipients, lung surgery candidates and for people with pulmonary concerns. Second Wind also provides support for families/caregivers/friends of the person experiencing lung related issues.
American Heart Association: https://www.heart.org
Many educational resources including: Healthy Living resources including recipes, fitness, healthy living and healthy lifestyle for people living with heart conditions.
Dilated Cardiomyopathy Foundation: https://dcmfoundation.org
Providing hope for people living with dilated cardiomyopathy.
Mended Hearts: https://mendedhearts.org
Provides peer-to-peer support, education and advocacy for people living with heart disease along with their family members.
The International Society for Heart & Lung Transplantation:
https://www.ishlt.org/about/patient-resources
Provides general medical and transplant related info.
World Heart Federation: https://world-heart-federation.org/about-whf
To connect, lead and inspire the cardiovascular community.
Informate: https://informate.org
Translated in both Spanish and English with the goal of providing education to Hispanic/Latino/Latinx communities about living donation including addressing cultural misconceptions, treatment options, financial issues and immigrant issues.
National Kidney Registry: https://www.kidneyregistry.com
Has resources to guide you on how to find a living donor, has initiatives to increase the pool of donors through “kidney swapping” or kidney paired donation, Donor Shield provides assistance, support and protections for Living Donors.
National Kidney Donation Organization: https://www.nkdo.org
Free educational webinars, with various resources for people considering living donation, have been living donors and also for kidney patients.
National Living Donor Assistance Center (NLDAC): https://www.livingdonorassistance.org/default.aspx
Financial assistance to reduce the financial disincentives to living organ donation. Your transplant center’s living donor social worker applies you for their programs.
UNOS: Becoming a Living Donor: https://transplantliving.org/living-donation/being-a-living-donor
Care 4 The Caregivers: https://care4thecaregivers.org
Founded for the caregivers of children with disabilities, providing those caregivers with emotional, physical and educational support.
CaringBridge: www.caringbridge.com
Free online tool to share health updates with family and friends, and a platform that allows family and friends to assist you with various tasks during your health journey. Caregivers or the patient can set up the account.
Family Caregiver Alliance: (ph: 800-445-8106) https://www.caregiver.org
Connecting caregivers with support, education, events/classes and CareNav (tool to help families navigate the complexities of the caregiving journey).
Leeza’s Care Connection: https://leezascareconnection.org/home
Free virtual webinars for caregivers.
Lotsa Helping Hands: https://lotsahelpinghands.com
Where you can create an online community to organize family and friends to coordinate meals and help for a loved one.
National Alliance for Caregiving: https://www.caregiving.org
Non-profit coalition of national organizations who focus on the goal of making life better for family caregivers through research, support and education.