American Liver Foundation

OUR MISSION IS TO FACILITATE, ADVOCATE, AND PROMOTE EDUCATION, SUPPORT SERVICES, AND RESEARCH FOR THE PREVENTION, TREATMENT, AND CURE OF LIVER DISEASE.

PUBLIC AND PATIENT EDUCATION: THE AMERICAN LIVER FOUNDATION'S DIGITAL CONTENT ALLOWS US TO REACH MILLIONS OF PEOPLE WITH OUR INFORMATION AND RESOURCE. THE ALF WEBSITE HELPS US BETTER DELIVER QUALITY PROGRAMS AND EVENTS TO OUR CONSTITUENTS INCLUDING MULTIMEDIA WEBINARS, VIDEOS AND BROADCASTS. IN 2021, ALF UPDATED THE WEBSITE TO INCLUDE A BUDD-CHIARI WEBPAGE, TRANSJUGULAR INTRAHEPATIC PORTOSYSTEMIC SHUNT (TIPS) WEBPAGE, BILE DUCT CANCER AND ACUTE HEPATIC PORPHYRIA WEBPAGE. ALF HELD WEBINARS ON A VARIETY OF TOPICS INCLUDING WILSON DISEASE, BILE-DUCT CANCER, PBC, LIVER CANCER, AND ACUTE HEPATIC PORPHYRIA. THE AMERICAN LIVER FOUNDATION HAS CREATED TWO ANIMATED VIDEOS THAT WILL LIVE ON THE ALF YOUTUBE CHANNEL IN DECEMBER. THE FIRST VIDEO SHARED MIND-BODY STRESS MANAGEMENT TECHNIQUES FOR CHRONIC DISEASE PATIENTS AND THE SECOND VIDEO EXPLAINS THE PROGRESSION OF LIVER DISEASE (HTTPS://WWW.YOUTUBE.COM/WATCH?V=O-KVLXYJ43I). ALF EXPANDED ITS EDUCATIONAL RESOURCE LIBRARY BY UPDATING PATIENT EDUCATION MATERIALS INCLUDING THE ALCOHOL-RELATED LIVER DISEASE BROCHURE, HEPATITIS B BROCHURE, CIRRHOSIS BROCHURE, AND IMAGING AND TESTING AT-A-GLANCE. ALL BROCHURES ARE AVAILABLE FOR DOWNLOAD FROM OUR WEBSITE AT HTTPS://LIVERFOUNDATION.ORG/FOR-PATIENTS/RESOURCES/BROCHURES/. THE LIVER LOWDOWN E-NEWSLETTER IS DISSEMINATED TO PROVIDE INFORMATION ABOUT THE PREVENTION, TREATMENT AND CURE OF LIVER DISEASE AND ABOUT THE FOUNDATION'S EDUCATIONAL AND SIGNATURE PROGRAMS, AN IN-DEPTH FOCUS ON SPECIFIC TYPES OF LIVER DISEASE, AND PROFILES OF LIVER PATIENTSCAREGIVERS' PERSONAL EXPERIENCES. IN 2021, OVER 200,000 PEOPLE RECEIVED EACH OF OUR E-NEWSLETTER ISSUES. ALF HELD THE 2ND ANNUAL HCC VIRTUAL PATIENT CONFERENCE IN 2021. THIS CONFERENCE PROVIDED EDUCATIONAL SESSIONS AND RESOURCES FOR HCC PATIENTS AND CAREGIVERS THAT ARE NOT ELIGIBLE FOR A TRANSPLANT ON TOPICS PERTAINING TO PATIENT CARE, TREATMENT OPTIONS, EMOTIONAL WELLNESS IN THE FACE OF A LIVER CANCER DIAGNOSIS, AND CAREGIVER RESOURCES. OVER 150 PEOPLE ATTENDED THIS EVENT. THE ALF WAS ABLE TO OFFER LIVER CHATS FOR PATIENTS AND CAREGIVERS. THESE CHATS PROVIDED AN OPPORTUNITY FOR PEOPLE TO RECEIVE INFORMATION IN A WAY THAT WAS EASYGOING AND INFORMAL. LIVER CHAT SEGMENTS INCLUDED PEDIATRIC LIVER DISEASE, FEATURING A PARENT WHOSE CHILD WAS DIAGNOSED WITH A RARE FORM OF LIVER CANCER AT THE AGE OF SEVEN MONTHS OLD, COVID, ALCOHOL AND CHRONIC LIVER DISEASE, AND A WORLD HEPATITIS DAY LIVER CHAT. THE 2021 PROGRESSION OF LIVER DISEASE AWARENESS CAMPAIGN, WHICH TAKES PLACE FROM OCTOBER TO DECEMBER FOCUSED ON REACHING AT-RISK INDIVIDUALS, LIVER PATIENTS AND CAREGIVERS, AND THE HEALTHCARE PROVIDERS WHO SERVE THEM. WHILE ALL STAGES OF LIVER DISEASE WILL BE DISCUSSED, ALF'S MATERIAL INCLUDES A CONCENTRATION ON END-STAGE LIVER DISEASE IN UNDERSERVED POPULATIONS. COMPONENTS OF THE CAMPAIGN INCLUDED: . PROGRESSION OF LIVER DISEASE ANIMATED VIDEO . PROGRESSION OF LIVER DISEASE INFOGRAPHIC . HEALTH DISPARITIES IN VIRAL HEPATITIS WEBINAR IN COLLABORATION WITH THE CDC ON NOVEMBER 17TH . SOCIAL MEDIA AWARENESS, INCLUDING A VIRTUAL TOOLKIT WHILE OUR EDUCATIONAL MATERIALS WERE DEDICATED TO COVID-19 IN 2020, WE STILL PROVIDED THE LATEST UPDATES ON THE PANDEMIC IN 2021 WITH VIRTUAL PROGRAMS INCLUDING: . A COVID-19 TOWNHALL SERIES TO ENHANCE THE LIVER COMMUNITY'S KNOWLEDGE ABOUT THE COVID-19 VACCINES. THROUGH THIS INITIATIVE, ALF WILL PROVIDE A VIRTUAL PLATFORM FOR LIVER PATIENTS AND THEIR FAMILIES TO HAVE AN OPEN DIALOGUE WITH A LOCAL MEDICAL PROVIDER ABOUT ONE OF THE MOST RELEVANT TOPICS OF THE DAY: THE COVID-19 VACCINES AND THEIR IMPLICATIONS FOR THOSE WITH LIVER DISEASE. . COVID-19 AND PEDIATRICS PROGRAM FOR PEDIATRIC LIVER DISEASE CAREGIVERS THAT INCLUDED EXPERT PANELISTS ANSWERING QUESTIONS ABOUT HOW COVID-19 IS IMPACTING CHILDREN WITH LIVER DISEASE. . ALF SHARED AN EDUCATIONAL VIDEO ENTITLED "10 QUESTIONS ABOUT COVID-19 VACCINATION AND LIVER DISEASE WITH DR. TERRY BOX". WE PULLED OUR MOST FREQUENTLY ASKED QUESTIONS FROM OUR HELPLINE AND SOCIAL MEDIA ABOUT THE COVID-19 VACCINATION AND LIVER DISEASE AND DR. TERRY BOX OF THE UNIVERSITY OF UTAH HEALTH ANSWERED THESE QUESTIONS. DURING THE AASLD LIVER MEETING, ALF HELD A COMMUNITY CONVERSATION CONFERENCE SESSION THAT WAS ATTENDED BY PATIENTS, PHYSICIANS, AND OTHER ORGANIZATIONS. ALF STAFF WALKED THROUGH THE ALF NASH BILL OF RIGHTS AND TALKED ABOUT PATIENT EXPERIENCES AND CHALLENGES FOR EACH OF THESE BILLS OF RIGHTS. THE AMERICAN LIVER FOUNDATION COMPLETED A NASH SCREENING PILOT PROJECT IN HOUSTON, TEXAS TO PROVIDE NASH SCREENING TO AT-RISK INDIVIDUALS IN A DIABETES CLINIC. THE CENTER SCREENED OVER 300 INDIVIDUALS FOR NASH. THIS PILOT PROJECT WILL BE REPLICATED IN 9 ADDITIONAL STATES IN 2022.

PATIENT SUPPORT: INFORMATION SPECIALISTS ARE AVAILABLE TO ANSWER QUESTIONS ABOUT LIVER DISEASE AND LIVER WELLNESS, INCLUDING RISK FACTORS, PREVENTION, SYMPTOMS, EARLY DETECTION, DIAGNOSIS, AND TREATMENT OPTIONS. ALF CAN DIRECT CALLERS TO LOCAL SERVICES IN THEIR AREA, HELP THEM LEARN ABOUT CLINICAL TRIALS AND HELP THEM FIND A PHYSICIAN. INTERPRETATION SERVICES ARE AVAILABLE FOR NON-ENGLISH SPEAKERS. WE ALSO HOST A VIBRANT ONLINE COMMUNITY ACROSS NUMEROUS SOCIAL MEDIA PLATFORMS AND ONE WEBSITE. IN CY 2021, OUR HELP LINE ANSWERED OVER 5,600 REQUESTS FOR INFORMATION VIA PHONE, E-CHAT, EMAIL AND "SNAIL MAIL". THE AMERICAN LIVER FOUNDATION'S PRIMARY BILIARY CHOLANGITIS FACEBOOK SUPPORT GROUP CURRENTLY HAS OVER 3,100 MEMBERS FROM 2,800 MEMBERS IN 2020 AND IS OUR FIRST AND LARGEST FACEBOOK SUPPORT COMMUNITY. THE NASH FACEBOOK SUPPORT GROUP, A SUPPORT COMMUNITY FOR THOSE AFFECTED BY NONALCOHOLIC STEATOHEPATITIS (NASH) HAS GROWN SIGNIFICANTLY SINCE ITS INCEPTION IN 2018. THE GROUP CURRENTLY HAS OVER 2,600 MEMBERS FROM 522 MEMBERS IN 2018. THIS GROUP IS OPEN TO ANYONE CONNECTED TO NASH AROUND THE COUNTRY AND SERVES AS A SPACE TO FEEL LESS ALONE AND SEEK ANSWERS TO QUESTIONS THEY MAY HAVE ABOUT THEIR JOURNEY. IN LATE 2020, WE CREATED A NEW FACEBOOK SUPPORT GROUP FOR LIVER CANCER PATIENTS AND THEIR LOVED ONES. THIS GROUP CURRENTLY HAS NEARLY 200 MEMBERS. EACH OF THESE FACEBOOK SUPPORT GROUPS PROVIDES CURRENT DISEASE INFORMATION, NUTRITION ADVICE, SUGGESTIONS FOR EVERYDAY LIVING AND ONGOING SUPPORT. EVERY WEEK, THE MODERATORS HOLD A FACEBOOK CHAT TO ENCOURAGE DIALOGUE BETWEEN MEMBERS. ACTIVE MODERATION AND FACEBOOK CHATS KEEP THE GROUP ENGAGED AND CREATE "BUZZ" FOR THE GROUP THAT RESULTS IN NEW MEMBERS JOINING VIA WORD OF MOUTH. ADDITIONALLY, THE FOUNDATION FACILITIES INSPIRE, A LIVER DISEASE SUPPORT GROUP AND DISCUSSION COMMUNITY WHERE PEOPLE CAN FIND SUPPORT AMONG OTHERS WHO ARE EXPERIENCING SYMPTOMS, COMPLICATIONS, AND NAVIGATING THERAPIES FOR LIVER DISEASE. TOPICS INCLUDE PEDIATRIC LIVER DISEASE, LIVER CANCER, AUTOIMMUNE LIVER DISEASE, VIRAL HEPATITIS, FATTY LIVER, LIVER TRANSPLANTATION, AND MORE. WE HAVE OVER 40,000 MEMBERS IN THIS GROUP.

COMMUNITY SERVICE: ALF OFFERS SEVERAL COMMUNITY EDUCATION PROGRAMS ON LIVER HEALTH AND LIVER DISEASE THAT ARE INTERACTIVE AND AGE APPROPRIATE. THESE POPULAR PROGRAMS INCLUDE: LOVE YOUR LIVER, LIVER WELLNESS - WHAT EVERYBODY NEEDS TO KNOW, TEENS TO TWENTIES - LIVER WELLNESS GUIDE, NON-ALCOHOLIC FATTY LIVER DISEASE, AND ALCOHOL-RELATED LIVER DISEASE. DESPITE THE PANDEMIC AND NO IN-PERSON PROGRAMMING, WE STILL DELIVERED COMMUNITY EDUCATION PROGRAMS VIRTUALLY WHEN POSSIBLE. IN 2021, ALF REACHED OVER 2,000 PEOPLE THROUGH OUR COMMUNITY EDUCATION PROGRAMS. ALF CONDUCTS ADVOCACY WORK ON BEHALF OF THE PATIENT COMMUNITY THROUGHOUT THE YEAR, ACTIVELY LOBBYING FEDERAL, STATE, AND LOCAL GOVERNMENTS ON PERTINENT LEGISLATION AFFECTING THE LIVER COMMUNITY. THE FOUNDATION HAS BEEN A MOVING FORCE BEHIND THE ACCEPTANCE OF AN AGREEMENT ON A COMPREHENSIVE "RESEARCH AGENDA" FOR LIVER DISEASE. WITH MANY PATIENTS WITH LIVER DISEASE REQUIRING LIVER TRANSPLANTS, THE FOUNDATION HAS RESOLUTELY LOBBIED CONGRESS AND STATE LEGISLATURES FOR LEGISLATION TO SUPPORT INCREASES IN ORGAN DONATIONS AND SUPPORT FOR LIVING DONORS. THE AMERICAN LIVER FOUNDATION HAS 1,350 CONSTITUENTS SIGNED UP ON OUR ADVOCACY PLATFORM AND WE REGULARLY SHARE ACTION ALERTS AND IMPORTANT ISSUES FOR LIVER PATIENTS. ADVOCATES SENT NEARLY 2,100 LETTERS TO CONGRESS IN 2021. DUE TO COVID RESTRICTIONS, THE FOUNDATION PIVOTED FROM AN IN-PERSON "ANNUAL DAY ON THE HILL" MEETINGS TO "ADVOCACY WEEK" IN 2020 WHERE STAFF, PATIENTS, AND VOLUNTEERS VIRTUALLY MET WITH LEGISLATORS TO DISCUSS PERTINENT ISSUES AND LEGISLATIVE PRIORITIES AND WE CONTINUED THIS FORMAT IN 2021. WHETHER IN-PERSON OR VIRTUAL, ADVOCATES RECEIVE TRAINING WHICH ENCOMPASSES A LEGISLATIVE UPDATE, REVIEW OF THE ISSUES, THE FOUNDATION'S POSITIONS ON THESE ISSUES, AND BEST PRACTICES TO ENGAGE LEGISLATORS. IN TOTAL FOR 2021, WE HAD 75 LEGISLATIVE VISITS AND OVER 30 STATES REPRESENTED. ALF SHARED A SOCIAL MEDIA CAMPAIGN ENCOURAGING THOSE THAT COULD NOT ATTEND LEGISLATIVE VISITS TO SEND A LETTER TO THEIR LEGISLATORS TO HAVE AN EVEN GREATER IMPACT ON THE HILL. OVER 700 LETTERS WERE SENT TO LEGISLATORS DURING THAT WEEK, AND WE HAD 300 NEW ADVOCATES JOIN OUR ADVOCACY ACTION CENTER. OUR TOP LEGISLATIVE PRIORITY FOR 2021 WAS THE LIVING DONOR PROTECTION ACT. PASSING THIS LEGISLATION WOULD BUILD ON RECENT EFFORTS TO IMPROVE ORGAN DONATION AND TRANSPLANTATION IN NOTABLE WAYS. THE AMERICAN LIVER FOUNDATION HAS PARTICIPATED IN THE AASLD ANNUAL HILL DAY AND THE DIGESTIVE DISEASE NATIONAL COALITION PUBLIC POLICY FORUM IN 2021.

RESEARCH AND PROFESSIONAL EDUCATION