Here are a list of patient and caregiver resources we found useful.
Donate Life America: A 501(c)3 nonprofit organization, Donate Life manages the National Donate Life Registry where people can register to be an organ and tissue donor.
Organ Procurement Organizations (OPOs): These are local organizations - with more than 50 in the United States - that are focused on increasing the number of donors and coordinating the donation process within their designated service offer. Many offer great information and support resources for transplant patients and families and donors and donor families, as well as volunteer opportunities for those interested in helping to raise awareness about organ donation.
United Network for Organ Sharing (UNOS): This is the private, non-profit organization that manages the transplant system for the United States. This site has good information about the governance of transplantation and a generous amount of data, including the Organ Transplant and Procurement Network (OPTN) database of those waiting for a transplant.
American Liver Foundation (ALF): Created in 1976, ALF is an education, advocacy, and research group focused on the treatment and prevention of liver disease. They also operate a vibrant community message board on Inspire, which offers a wealth of information.
American Liver Foundation’s NASH Support Group on Facebook: In October 2018, ALF launched a Facebook-based support group for those affected by Nonalcoholic Steatohepatitis (NASH). It’s a place where patients and caregivers can connect about NASH.
Caregivers for Liver Transplant Patients: This is a closed Facebook group (signup/approval required) started by a caregiver for a liver transplant patient. It is a great resource of information and encouragement for this niche group of caregivers. It’s chicken soup for the caregiver’s soul. I only wish this group was around when I was in the early days of Jim’s transplant.
Well Spouse® Association: This is a non-profit 501(c)(3) membership organization that advocates for those caring for chronically ill and/or disabled spouses or partner. While the organization does not specifically focus on caregivers for transplant patients, the resources - particularly about stress and emotional health - are useful.
American Society on Aging (ASA): While not specific to transplant caregivers, the site has a very good directory of caregiver resources.