UNDERSTANDING PATIENT RIGHTS
In collaboration with the Hepatitis B Foundation, patients, medical professionals and other key stakeholders, ALF held a Hepatitis D Roundtable to identify the unmet needs of people living with the hepatitis D virus (HDV). A Patient Bill of Rights will be created to better support and engage people in hepatitis D management and to open lines of communication between patients and doctors to prioritize liver health. Hepatitis D Roundtable Rare Liver Disease Summit ALF held a two-day virtual Rare Liver Disease Summit in which patients, medical professionals and other key stakeholders worked on identifying solutions to improve the health outcomes of those affected by rare liver diseases. A Patient Bill of Rights was created to help patients achieve earlier diagnosis and understand how to avoid misdiagnosis, increase knowledge of genetic testing, address stigmas and improve the overall patient experience.
ADVANCING LIVER TRANSPLANT ALF is committed to advancing living liver donation so that everyone who needs a liver transplant has an opportunity to receive one. Liver transplant experts from leading medical institutions gathered throughout the year to brainstorm innovative ideas to increase living donor liver transplants, break down barriers and utilize information learned from the success of living kidney transplantation.
During the 2022 Transplant Games in San Diego, ALF convened a patient and caregiver workgroup to identify the difficulties they face with transplantation to help us address gaps. Helping families understand living liver donation is key, which is why we developed a new, five- part animated video series to help patients find a living donor. A complete toolkit with educational information and resources for donors and recipients can also be found in our Living Donor Liver Transplant Information Center. THE EDUCATED PATIENT: A LIVER CANCER CONFERENCE Hundreds of patients, caregivers and family members registered for the third annual The Educated Patient: A Liver Cancer Conference Presented by Exelixis. The two-day virtual conference included presentations, workshops and opportunities to engage with leading medical, nutrition and research experts about issues most relevant to those affected by liver cancer. Topics included:
Liver Disease Screening Treatment Types Managing Medications Liver Cancer Prevention and Control How to Navigate Clinical Trials Breakthroughs in Liver Cancer Research Transplant
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