Good afternoon, everyone. I'd like to welcome you to our webinar, How Patients Can Get Involved with ASLD Liver Meeting. I'm Brian Clary. I'm a viral hepatitis advocate and a member of ASLD's patient advisory group. Today, we will provide information about ASLD, its annual liver meeting, which is being held in November this year, and opportunities for patients and patient advocates at the liver meeting. I would like to thank ASLD for hosting this webinar and for its commitment to partnering with patients and patient advocates in the fight against liver disease. Our speakers today include Dr. Meena Bansal from ASLD's governing board and professor of medicine in the division of liver disease at the Icahn School of Medicine at Mount Sinai, and Karen Hoyt, one of our leading liver patient advocates in the country. I would now like to turn it over to Dr. Bansal. Thanks, Brian. I'm excited to be able to discuss how patients can get involved with ASLD and engage at our annual liver meeting to be held virtually this year at November 12 to 15. ASLD is comprised of two organizations, the ASLD and the Foundation. Together, they share a vision for the prevention and cure of liver diseases. Each organization has distinct missions and supporting programs. In 1950, ASLD became the convener of experts in hepatology with the mission to advance and disseminate the science and practice of hepatology and to promote liver health and quality patient care. It's the place for professional education, career development, and knowledge sharing. Its activities also include public policy and advocacy and collaborations with other organizations who seek to advance the care of patients with liver disease. The Foundation is focused on providing resources to encourage more liver disease research and training. We invest in innovative hepatology research and in the people who study and treat liver disease. Next slide, please. ASLD is comprised of about 6,400 members with over 1,100 from around the world. We are researchers, physicians, trainees, students, and advanced practice providers. We work to connect our 6,400 members with each other through 16 different special interest groups and connect to influence policy and law through advocacy efforts on Capitol Hill. We advance the science and practice of hepatology through various educational conferences, training programs, professional publications, and partnerships with government agencies and sister societies. And through our Foundation efforts, we support research, career development, and clinical training. Next slide. ASLD and the Foundation share strategic goals. Three years ago, we held a retreat to create a five-year strategic plan. As part of that strategic plan, the task force recognized that we needed to engage with our patients and partner with them to improve health outcomes. Today, I would like to share with you the progress we have made and engage with you to continue to move us forward. Next slide, please. Our strategic plan has outlined three key areas of focus. Increase patient representation in ASLD activities through our patient advisory group, various committees, and task forces. Have higher levels of patient engagement and awareness of the mission through our liver meeting sessions and networking, guidelines and resources, and connecting with our Foundation work. And to have a stronger profile and partnerships and advocacy initiatives, including a distinguished service award, our virtual Capitol Hill Day, and our NASH CARE Act through collaborations with GLI. Next slide. First, we formed the patient advisory group to help us successfully execute an ASLD strategic patient engagement plan. We are grateful to our current patient community representatives who serve on the PAG for all their ideas, counsel, and contributions. Wayne Eskridge and Tom Nealon will be our first PAG members rotating off, and we welcome Jackie Chen, Ronnie Marks, and Lorraine Steele in 2022 to the committee. Next slide. As part of our patient engagement, we have patient representatives that were selected to join a variety of committees and working groups, and we want to recognize those community members shown here currently participating, engaging, and advising ASLD. Next slide. As committee members have two-year terms, our first round of representatives will be rotating off, and their position will be filled in 2022 by people nominated by the patient community. We are excited to welcome this new group of partners and look forward to the contributions and the impact they will make. Next slide. We are now preparing for our 2023 nominations. We have seven openings, three of which are on the patient advisory group, one on the community and technology committee, practice guidelines committee, practice metrics committee, and public policy committee. This nomination process opens October 15th of this year and closes January 15th. The patient community will receive an email to request nominations, and self-nominations are always welcome. Next slide. We were honored to, in 2020, give our first Distinguished Advocacy Service Award, which is given to advocacy organization or individuals in honor of their sustained service and contributions to the liver disease community. Our first honoree was the Hepatitis B Foundation, represented by Timothy and Joan Block, and we look forward to recognizing GLI, represented by Donna Cryer, this year during the liver meeting on the first day, November 12th. Again, nominations for 2022 will be open soon, and again, the patient community will receive an email to request nominees. Next slide. ASLD has been engaged in advocacy for a number of years, as public policy issues clearly have a direct impact on hepatology. We engage with the FDA, CDC, CMS, HHS, and key institutes at NIH. Our annual Liver Hill Day, where we partner with our patients, was virtual in 2021, and ASLD leaders, alongside patients, had 20 telephone meetings with U.S. representatives and senators, with this year's key messages focusing on support for liver research, research funding, hepatitis C elimination, COVID-19 Prevention and Awareness Act, and continuing telehealth reimbursement for physicians after the pandemic is over. Next slide. On September 29th, please join GLI, Global Liver Institute, ASLD, and the CDC to discuss the NASH CARE Act, which aims to establish a federal strategy to prevent, diagnose, and treat non-alcoholic fatty liver disease. Next slide. The moderators for that session will be Donna Cryer, President and CEO of GLI, Dr. Raymond Chung, ASLD President and Director of Hepatology at Mass General Hospital. Our speakers include Dr. Mary Ranella from Northwestern, Terry Milton, who's a patient with NASH, Dr. Allison Goodman, a medical epidemiologist from the CDC. So we hope that you will all join us in advocating for additional support for the NASH CARE Act. Next slide. It's also important to point out that we are committed to condemning bigotry and discrimination based on race, ethnicity, gender, or sexual orientation. We have an ASLD statement on diversity, our call to action. In conjunction with our inclusion and diversity committee, the ASLD is committed to supporting the research and education of underrepresented trainees and underrepresented trainees and junior faculty members by providing travel awards for the annual meeting, identifying outstanding abstracts on health disparities research, and highlighting those at the liver meeting and our annual diversity workshop. To be accountable, we are collecting accurate and complete demographic data on our current membership so that we may identify and target areas to increase diversity and make this data available to all membership. We aim to address inequities in the hepatology workforce and outline steps to mitigate these disparities in an upcoming white paper in hepatology. And lastly, in terms of leadership, we have included an inclusion and diversity committee member on our scientific program committee, which is responsible for establishing the program for the liver meeting, and on the nominating committee, which takes nominations and then presents them to the governing board for committee assignments. We hope that this will foster diversity in our educational programming, speakers, and leadership. Next slide. In response to COVID-19, we had a massive collaborative effort. This was initiated with the patient community and spearheaded by Drs. Raymond Chung and Raj Reddy. Numerous patient resources were created to support those living with liver disease during this pandemic. These documents are on our website, can be printed or emailed, and we encourage you to share these materials with your colleagues, friends, family, and those in need of more information. Next slide. We are now in the process of producing for the first time patient-friendly guidelines in conjunction with the development of our guidances, our guidance statements. Reproductive Health will be first up, will be rolled out this fall with Ascites to follow in 2022. In addition, we have patient-friendly summaries, which will be published in Clinical Liver Disease. Alcohol-associated and autoimmune hepatitis are already available, and PBC and hepatic encephalopathy to follow. Next slide. We offered a vast array of educational programs in 2021 in a variety of formats, free webinars, digital meetings, on-demand content through liver learning, and of course, hopefully, we'll be returning to in-person soon. We had ASLD events like the liver meeting, which brought more than 8,000 people from around the world, and I'm going to talk to you about our 2021 liver meeting shortly. The pandemic accelerated our digital outreach. In 2020 and 2021, we've had new levels of participation with over 10,000 webinar registrants across 97 countries. We are one of the four GI societies that partner with, to partner to develop the programming for Digestive Disease Weeks, known as DDW, and we engage with our sister societies on a global scale. 2022 promises to bring more than 30 programs, including our innovative Emerging Topic Conferences. You can see the webinars that we have still coming up, Promoting Equity, Diversity, and Inclusion in Communication Near the End of Life, an AACE Innovation in Cardiometabolic Clinical Practice online program, a webinar on microbiome and NASH and cirrhosis, PSC and hepatic fibrosis, an update from the field, and the liver meeting digital experience, which we're going to talk about shortly, from November 12th to the 15th. I'd like to also, next slide please, I'd also like to spend just a moment focusing on the important work of our ASLD Foundation that continues to invest in innovative hepatology research and the people who study and treat liver disease. Next slide. ASLD Foundation funds awards for researchers at all levels, from medical school through mid-career, from basic science to clinical and translational research, to clinical training, we sponsor a hepatology fellowship, as well as travel awards, both abstract travel awards, as well as our emerging liver scholars program, where we provide funding for medicine residents who are contemplating a career in hepatology to come to the liver meeting and engage with peers as well as mentors and attendees at the liver meeting. Next slide. In 2021, the ASLD Foundation gave out $2.8 million in all of these different award categories and have given over $55 million since 2000. Next slide. And now focusing kind of on our marquee meeting, the must-attend conference, the liver meeting, from November 12th to 15th. We hope this will bring together more than 8,000 people sharing research with over 2,100 abstract presentations. Here you'll find cutting-edge science, expert speakers, and tremendous opportunities for peer networking. We'll be offering four live days of programming with sessions that can be available on demand until February 2022. So if you're not able to catch everything live, the content will be on our website for you to view at a later date. Next slide, please. For our patient community, we have added two new registration categories, patient or patient advocate, with the price of $50 with access to everything. This will include programming that's specifically curated for our patient community, including 18 interactive sessions, daily abstract tours, scientific and educational programming, and as mentioned before, on-demand sessions until February 2022. There is robust opportunities for networking and a variety of resources, including patient and advocate booth, as well as daily news articles with session highlights. Next slide. More specifically, we will kick off the meeting with our annual forum and meet and greet, our keynote lecture, how physician-patient partnerships can improve liver disease care and research, as well as a host of programs as outlined here. We will have eight abstract tours, which will focus in a disease-specific manner, and opportunities for networking, which I'll share in an upcoming slide. Next slide, please. Obviously, don't forget about exhibiting. This can bring more visibility to your advocacy organization, enabling our members and larger healthcare community to learn more about your organization. There's countless options to customize booth with banner advertisements and marketing materials. Each option allows your organization to directly connect and interact with conference attendees. Next slide. And in terms of networking, we have a specific community conversations networking room where you can just pop in and see who happens to be there. But you can also sign up to schedule your own meeting and each of those meetings can hold up to 100 participants. This was a huge success last year and we hope that it will even grow greater this year and foster collaborations between different organizations and allow for interactions with also other attendees at the liver meeting including faculty members, advanced care practitioners, etc. And now I'd love to introduce you to my partner in crime here, Karen Hoyt, who's going to give you from the patient perspective how can you get involved with ASLD and the liver meeting. Thank you very much, Karen. It's so great to see so many faces in the group and yes, Robin, I saw your question and I think it'd be great for you guys to share your share why you're here and tell a little bit about what organization you're with or who you're representing. I think that's amazing. So please do that, Robin. I saw some other Rs in here, Ronnie. And it's so good to see everyone here today. And first of all, I'd like to start off by thanking the ASLD. And when I use that term, I'm talking about the organization and the foundation for inviting us as patients once again, as Dr. Bonsall said, they made a concerted effort and we've seen that kind of engagement over the last few years. And I think this is a big thing. It's really at the heart of what the ASLD is doing is they're reaching out to patients to engage us to bring that inclusion to help us to inform and then to bring our energy to the table to help us. And so I think it was Robin asked if she could, if they should share, I think everyone should share why they're here. I think that'd be great. But I want to thank again, thank you know, many of you all that are here today for coming. I appreciate your attendance. Again, thank you to everyone who helped us set this webinar up and to the ASLD for inviting us here today. All right, how can patients get involved? I'm going to start off with saying, what do you want more of? Because patients do. Hi, Robin, glad to see that. What do you want more of? And because that's really what the ASLD in jointed effort is asking us, what do patients want more of? They want to hear our voice. Well, I think we can all, whether we're a patient, a caregiver, or whether we're leading up an organization for advocacy, we want more support for liver disease. I know for myself, I had a surprise diagnosis with end stage liver disease. I was literally cycling, thought I was a healthy person and kind of fell over with ascites and a variceal bleed. I was highly motivated to get more information. And that's what I wanted support. I wanted information. I was living in rural Oklahoma and rural healthcare was great, but I ended up having to go to a bigger city. And that's when I found out, began Googling and trying to find answers. Patients are very vulnerable, patients across the country. We do have a lot of pockets of rural America where people may not have access to hepatologists. And we rely on our doctors, our primary care physicians to be able to dial in to the AASLD to be a part of helping to inform our decisions. I wanted to live longer, stronger with liver disease. And I'm so thankful. It's been just a little over 11 years since my initial diagnosis. And I'm so thankful for all the work that's done. I really credit ASLD to the rescue. That's the reason I'm here today. If it, I ended up with everything tumbling down on me. And if it hadn't been for the work that they had done, I wouldn't be here today to be able to give this talk. I'm so happy. Patients do need information, whether it's a lifesaving treatment, for example, you know, sealing up a variceal bleed that was real important in the beginning, but that was just the tip of the iceberg for my journey. And for all of our journey with liver disease, because it's so complex, there's many medications and procedures, maybe multiple procedures and surgeries. And then there's the routine care. What I found out was that initially I was diagnosed with hepatitis C. And since we didn't really know that much about it at the time, I just began to search liver disease in general. And what I found out when I went to the ASLD website was that really doesn't matter, you know, liver disease patients, we cover a broad spectrum of everything from an environmental cause to a rare or genetic type of cancer, where a lot of different voices as liver disease patients. And I'm just really grateful for that we are able to get the surgery and the routine care that we need as a result of the information that we're getting through the ASLD. So we're invited this year to join the conversation. So who attends? So Dr. Mina has already answered that there's many doors to enter. And some of them will be medical students, as she mentioned, they'll be presenting posters, there's going to be doctors and patients, patient advocacy going on in all in all areas of the liver meeting over four days. And it's more easy to enter this year than it ever has been before, because we have the digital liver meeting, and they've reduced the cost because it used to be cost prohibitive for many patients. And you might have an advocacy org that can pay for your entrance. But in this case, I think this is something I mean, it's the best $50 you'll ever spend, because the amount of education you get is just going to be amazing. I like to hear and I made a little note about what's the buzz. I really am really the very first meeting that I attended where they were talking about some highly new advanced stuff that they were doing with staging fibrosis. And I get a little emotional just talking about it, to hear that there are new things going on that we have access to as patients, that we're no longer relegated to a chat room in a health and medical forum. But that today we're brought to the forefront, and we're able to sit live in a meeting and listen to the things that, you know, our health outcomes, listen to them being discussed by the doctors and the researchers, and listening to these events live with other patients at our side. And it's so exciting that the ASLD has lifted the patient voice. One of the webinars I did, one of the hashtags that the doctors put on it was patient lift. And I'd never heard that one before. But in a way, I think they do kind of what I found in working with the ASLD is they do like to lift the patients in a way, if they were to carry us off the field, if you know, if there was a game one, I think they would consider us the heroes. I know we look at it the other way, but they're so proud when they see a patient who's made it despite a lot of adversity. So that's the patient lift. So what is the digital liver meeting? For those of you who've been there before, you'll know, when you first log in, there's a program calendar. And that's where you're going to get the overview of everything. So there'll be, there's annual meeting sessions that are like set in stone. And I kind of like the, the legitimacy of that, because there's, you know, doctors are used, they're accustomed to going to these meetings. And for example, you know, there'll be the keynote session, and there'll be, you know, certain speakers or certain meetings that are held every year, and they look forward to it, because that's where new things are learned. But then I also like the late breaking abstract. So if there's some new stuff that's just coming out about COVID-19, and how it affects patients gut health, or how it affects a transplant recipient, or someone who's on a certain treatment, all the late breaking ideas are going to be there too. And I like to be in the know. And this gives us an opportunity to hear the the latest research they're working now, as they've already begun to put together these formats, they're working now, doctors are working day and night to write this stuff up to present it to their peers, and to us as patients, there's going to be product theaters and symposiums. And you'll get to learn about new drugs, how drugs are administered, you know, dosage, what recommendations, and that's one of the first things. Whenever I first went to, so I went from a rural doctor to the doctor in a bigger city, and then they even sent me to the state capital of Oklahoma, I'm in rural Oklahoma. And that's where I first heard a surgeon there talked about the guidelines that the CDC and the ASLD had proposed for hepatitis C treatment. And that was in 2010. It was when I was first introduced to the whole thing about the ASLD.org, and how they were, they were producing these kind of guidelines that would really eventually save my life and many other patients as they talked about this. So tons of new stuff. I mean, if there's a new tips procedure, if there's something new that they can use in surgery for taste, all these things are presented and discussed here. And then there's the breakout rooms. And that's where we have fun. There's all kinds of different breakout rooms, you'll be able to join. And there's different session types. So some will be like a live presentation and others will be pre recorded. And some of them will be like a big zoom room. I'm so happy to see all these names coming on here. Oh, this is just great. And liver transplant recipients. Hi, Milton. So glad to see you all here today. So as far as signing up, it's just almost as easy as it was for signing up for today's webinar, you're going to click the link and choose whether you're a guest or a member. And then just fill out the information. I'll be frank with you. The first time I went, I wasn't even sure how to how to fill it out. Well, I'm an advocate, but I'm a patient. And I felt like maybe I needed to have more alphabet suit behind my name. But this is for us. And more and more every year. This is for us as patients and go in and sign up that you're a patient or that you're an advocate or a caregiver. And then check your email for the link. And be sure and save it in your calendar. And then that way the date will roll up just in time. So about the calendar. The calendar is where it shows each of the daily sessions. And it's a it's a great digital format that so easy, and it's real clear to navigate. And they've made it very easy for everyone to be able because there's going to be simultaneous things that you can choose. So you get to decide if you want to go deliver. I just made a list of things. I don't know which specific ones are being held this year. But like if there's one on fibrosis, and then there's one on hepatitis, then you get to choose which one you're going to go see in what time slot. So get your you know, your paper calendar out or go ahead and click on them in your Google or your Outlook calendar. Create your own schedule and have your own format. And there will be breaks for meals. Although some patients and I last year, we kind of sent spent our lunchtime together. And I just turned off my camera. And we just spent some time in a chat together. And it was it was really great. So I think I put the presidential welcome on here. Because that was it was so very moving for me to watch that last year. And in addition, there was a powerful video presentation about the history of the ASLD. And some of it was black and white photos from back in the day. And it showed how they came to be as an organization and how, you know, other other different organs had their organization, but how the ASLD was actually formed, and the doctors who founded that and what they promoted. And honestly, that's when you realize, gosh, if it weren't for these guys, we wouldn't be able to have access to the medical care and the treatment that we are able to partake of today. So exciting. So create your schedule. Oh, and so everybody who came to my house, because we have access to it for, you know, several more weeks, everyone who came through my house for the next few weeks, got to see that video because and it was a powerful one that I was able to watch again and again about the history of the ASLD and the doctors, the level of care that we're able to have access to today. And so you'll be sharing once your calendar so that you can do the breakout sessions. And then there's categories. So they really do break it down and make it easy for us to see. So every type of liver disease, every type of practitioner, I mean, there's going to be, you know, these are the rock stars of the liver community. So you're going to see your big hospital, including Dr. Benson, you're going to see your rock stars who really are leading and teaching and doing the newest advances and helping to educate other doctors as they come on. So they're going to be there. And then even my nurse practitioner who saw me through my hepatitis C treatment, she attends every year. So it's, it's literally everyone from clinicians to surgeons to students, and then now the patients, and there's something for everyone in every category. So if you've got acute or mild liver disease, if you've got chronic, there'll be something to learn for you. With the COVID-19, of course, they're going to bring everything they've got, everything that's new, what they'll be bringing to the table. And I'm sure that'll be mentioned throughout biology. Do you have a genetic liver disease or is there a genetic component to your rare liver cancer, then that can probably be discussed as well. As Dr. Bonsall mentioned, that the public health community is always represented there. And it may be on a state level. Like I saw some state officials that were in there last year, but then there's also our national health figures who are there, like from the CDC, they're well represented, so that they can then, you know, disseminate that communication down into the fields and into the rural Oklahoma or rural wherever you live. And if there's specific complications that you like learning about, I like that, because I seem to have every complication that could come. And someone said, well, you know, why do you think that you were able to make I said, I don't, you know, I really don't know. But I do give credit, it takes a village from my nurse practitioner, all the way up to all the doctors that we're going to meet in the following weeks at the ASLD. I give them all credit. And I think we all can. So in addition to categories, their session types. So there'll be continuing education, and doctors will get continuing education credits that they have to have to keep their licensure up. And then there's also some patient led as you see, and there'll be other advocates who are helping to lead some things. I'm really happy to see Donna's name on the list again this year. And whether it's endoscopy, transplant, meet the experts, I love those meet the experts. I love the brainiacs who dig in on a specific field of medicine, and dig in and help us to get the answers we need. There may be those parallel meetings. And you can you know, you can always go through and pick. I think I'm kind of being redundant here with the gut and liver microbiome. I'm glad they're looking at that more, especially for people with IBD and Crohn's. You know, we like to look a lot, talk about diet, and they're learning more every year. And we get to find out about it. Any experimental advances that have been made will also be brought to light. So I invite you to create your own itinerary. And I put 12 through 15. And I put three full days, pardon me, that's four full days. And join us for the live. And then I put video and games, we're not playing video games, there will be live, there will be some presentations that are pre recorded. And then there are games where you get to go in. And so you get to run around. And, you know, if you see the posters, and you click that off, and you go, you kind of go through and fill up a game card, it's kind of like a SLD bingo or something. And if you I don't even know what they're calling it, but it is a fun game. And they do have prizes. And since we can't be in person and get little gift bags, they do have digital gift bags that they offer to you. And you'll enjoy that. And there'll be presentations, be sure and let's find each other at the you're welcome. Be sure and let's find each other at the small group chats. I see so many people in here that I've had the privilege of meeting face to face and many more of you. We are very good friends in social media. And we're very good friends behind the scenes and our Facebook groups. And some of the stuff I don't even have to say because we have been for over a decade, I've been part of some very private conversations that are now becoming very public. And I'm getting, I'm so thankful to stand, I'm getting to stand beside patients who are getting to be a part of the ASLD this year. There'll be great moderated Q and A's. So by getting started, I put on here my story of ASLD, you know, I had that emergency room diagnosis. And I guess this is kind of, I had real humble beginnings, you know? And so I think anybody can rise up and become a part of the ASLD. When I first was diagnosed, I was living in rural Oklahoma. I didn't know what was going on. All of a sudden I'm being sent to specialist and everything I was Googling wasn't leading me a whole lot of places back in 2010. And I had HE anyway, so I was confused, but I got to the ASLD.org. And I know many of you have spent a lot of time on that website and there's great publications and education. It's, it's very friendly for physicians. And I'm so glad that Dr. Mina brought out that it's becoming very friendly for patients. I, I got to help work on some documents. Many others are working on documents with doctors and teams behind the scenes. And, and again, just very humble. I'm, you know, I'm worried about my spelling. I'm a retired, I was a retired teacher. I'm back in the classroom now, but with HE, sometimes I think we have a little, we feel a little vulnerable, especially when we're working with experts and these doctors are really doing their best to lift that patient's voice and help to give us the power to speak out and to help talk about the things that are important. And you're going to see more and more of that on the ASLD website as we go. So be sure and spend some time on the website and look for those opportunities for patients at the meeting, but in continue to look for those opportunities. I see many of you are already have been nominated for and have accepted positions. And I hope more of you will continue to do that. And we can work together as patients to lift that patient voice. When I very first, I hesitate to tell this story, but at this format, but with patients, we talk like this. So I got the email inviting me to be a part of the COVID-19 task force. And I was like, oh my gosh, I literally printed the email, ran it into my husband, who was in a zoom meeting at the kitchen table. And I said, they've invited me. Do you think I can do this? I wonder what they want. I was real nervous. And so they had me sign something just, you know, kind of a non-disclosure type thing. So I signed that and, you know, put it back in and got it emailed across. And, and then I began that partnership. And my first zoom meeting was with doctors from all across the country. And I was just like, not, not even turning my mic on because then that kept me down in the lower corner. And, but the doctors were pretty persistent in asking Karen, in your experience, Karen, would you speak to the patient's opinion on this? And I was overwhelmed by the courtesy that they gave to lowly Karen. Now I got all dressed up. I was wearing like a wool suit. It was in the spring. It was hot. I was so nervous, but they immediately took that nervousness away. The doctors did. And that's when I came downstairs and I told my husband, I said, you know, I was so nervous about that. And I said, you know what I found? He's like, what did you find? I said, I was invited. And I think that's an important word for us here today. That's part of the title of our seminar. We were invited to be a part of the talk. We're invited to the digital liver meeting. We're invited to take place on these task force and to stand up for the patient voice. And that invitation, when someone invites you, they're welcoming you and they want us to speak. And they trust us to speak on behalf of other patients who are experiencing the same thing. So come join us. We do have voice and together we can see old friends, make new friends, gain knowledge about our health, share experiences. This is powerful, help shape the future and utilize our phone or computer to access information. And then, you know, those of us who are joining us, we like to inform others about how liver disease affects our daily lives and then help to move forward by partnering with the liver medical community in a powerful new way. That is really great. So go to the ASLD.org and fill out your app and then check your email. Be sure and invite a friend. I'd love to see a huge group of patients there this year. Tell your physician, I've told my doctors, I said, Hey, you guys need to be there and post it in your social media. Let your doctors or your clinic know that you're going to be there this year and send messages to this team or anyone at ASLD if you have any questions. So I want to thank you guys for allowing me. I think that's the end of my presentation. And if anyone has any questions, you can put them in the chat. Well, excellent. Thank you so much to both of our speakers. Karen is no surprise that you are so well known and loved through the chat messages. That was amazing. And thank you again for all of your advocacy as well as thank you, Manzal, for the same and for taking the time to inform all of us about the liver meeting and ASLD and ways people can get engaged. So we have about 15 minutes. I want to encourage questions or comments. We're doing that through the Q&A feature. If I have that correctly, or chat. PSC partners, I see your hand raised. If there's a way you can type in your question, since that's how we're going to take questions or comments. We'll just pause here for a minute. I believe there were some questions that came through, but I believe they were already answered through the chat field. While we're waiting for that, at the end of the liver meeting, we're going to have a feedback session. Each year we try to get better and better. And so if you attend, and again, I hope you do, we'll then kind of debrief on what would you like to see different? What would you like us to add in subsequent years? We're listening and we want to partner with you to kind of continue along our patient engagement strategy. Great. I see the start of a question from PSC partners, excuse me, if you want to. Some questions that were asked, some of the things that were asked in the session were also about clinical trials. This is the place where you hear about clinical trial results, interim results. So to the question that which trials are still open and enrolling, that information, this is exactly where you're going to get all of that information across all disease spectrums. The late breaking session is where it's really hot off the press. We just got those late breaking abstracts and are reviewing them now. And so, you know, those sessions are always full of kind of the latest and greatest in clinical trial results. Great. Thank you. So we're starting to get some questions. So let's start with, have there been formal or organized need assessments of patients, families, and or caregivers? So the PAG is our advisory group. And so that was formed really to solicit that information. They have so much experience in their own advocacy organizations. And so it's through that. And then, of course, the committee involvement. So we're kind of asking those patients who are part of those committees to tell us, what do you need that you're not getting? And so I think it's not a formal needs assessment. There was a patient survey that was sent out actually, but that was, I think, in the beginning. It may be time to revisit that and try to assess what our unmet needs are as we move forward. And so that's certainly good feedback that we can discuss at ASLD. Great. Thank you. We have a couple of questions about the Liberty Hill Day, the Capitol Hill Day, just sort of information about how patients might get involved with that. Yeah. So of course, with COVID, it was virtual. But historically, we would all get together and physicians would bring their patients and patient advocacy organizations can sign up to be part of that kind of collective group. The committee then will have kind of the main ask that we're going to go to Hill, liver capital, you know, go to Hill together. And it's a group of patients along with physicians and other advocates. Usually, it's in person, and we actually go to appropriate, you know, demographically appropriate representation from where the patients or patient advocates come from to discuss the needs. This year, we don't have a date yet for 2022. So that will be shared as soon as we have that. But any kind of desire to if you email in a lot of the different emails that are going around, if you express an interest, we will reach out and make sure that you're engaged. That's great. And before I get to the next question, I want to do an extra plug for that I've participated in several of the days and very well organized, great way to make sure your voice is heard and to partner up with for patients to partner up with, with providers and medical experts is really a strong, strong team and strong force to go in and talk with our elected officials. So there's a question about to last year, someone had difficult PSC partners had difficult to finding out how to access the patient advocacy sessions. And so any thoughts around that, or in case this happens again, this year where people would go. So there's a booth, there's always going to be kind of a manned booth, if you will, to help answer any questions that might come up during the meeting itself. So it's almost like a help desk, if you will. And so I think that if if you are encountering any issues, certainly go there, email us, we'll be there, you know, if you're having an issue, and we can direct you to the right, right person or place to help with whatever your specific need is. Excellent. Thank you. Take a look here. Well, I'm going to pass along a comment. At the last life meeting. Carol love the advocates lounge to relax or set up meetings, being invited to other lounges to speak. People met new friends, great networking opportunities. So that's great. I enjoyed it as well. I think it's a great addition to the meeting, particularly since we're meeting virtually. And, you know, people aren't feeling as connected. Maybe this is a great way until we're able to meet a person to make new friends and share ideas and resources. And we plan to use that live once we're live again, that lounge even more effectively by having like rotating speakers come to the lounge to have more of that kind of personal kind of discussions. And so that was that was the plan. And so hopefully now for 2022, we can implement on that plan. It's great. Being asked in the future, are you considering both in person and virtual for advocacy efforts? I think that we're never going to go backwards on having some virtual components, we've recognized that that really opens up access to such a broader group. So I think we're always going to have some hybrid type of version for subsequent liver meetings. That was actually the intention this year until the Delta variant popped up. We planned on having being in person in Anaheim with a hybrid component for virtual. But, you know, we know how that went. Yeah, unfortunately, we've heard from Ronnie Marks is excited to be a part of the patient advisory group, bringing the voice of the community she works with nationwide. Anybody knows Ronnie knows he's gonna be a very powerful voice on that committee. So we're really excited about that. See if I'm getting all these questions. Sorry, there's so many boxes here. I think we've got all the oh, wait, here's one more. Sorry. I see a question of the hill advocacy day. So that's just it's always like one day. It's like a big tour de force, if you will. So it's really once once a year, usually in March, April, historically, but with the virtual component, it changed last year. Excellent. We like the idea of focusing on the caregivers. I don't know that we have done enough there. There was a comment as I reflect on some of the programming, I feel as though maybe that's an area where we could supplement some of the things that we're doing. So thanks for that. A couple more minutes, if folks want to enter in some questions. Being reminded to please complete the post webinar survey. Those of course are really helpful for planning future webinars. Yes, I'll just make a reminder that registration is open for the liver meeting. The link has been posted. There are special rates for patients and patient advocates. So which is great. ASLT has been providing that for us the past few years. Very much appreciated. And so I took the liberty of taking a picture. And while Mina was speaking, had such a beautiful smile. And I've tweeted everything that I've seen. And I'm going to share a picture of smile. And I've tweeted everyone that I could. And then I put tag and retweet. And so if you go to the ASLD hashtag, you should see our tweet. And so tag and retweet if you want to. And I know so many of you through Twitter. It's going to be fun. The meeting is going to be a blast this year. Yeah, I think so. Hi, Lorinda. Just a reminder on nominations. You know, nominate yourself. I mean, you don't have to be affiliated with any kind of patient advocacy organization per se. You can just be a patient who's interested in getting more involved. So self-nominations, you know, I think, please, please nominate your peers, your friends, your colleagues, or yourself. Great. Looks like we're reaching the end of the questions. I very much hope to see everyone and at the meeting and in the lounges. I look forward to meeting those of you I haven't met and seeing old, old friends at the meeting. I guess I'll close thanking our speakers again for taking the time and thanking ASLD for, again, for your commitment to engaging with patient advocates and patients in your work and in your meeting and for hosting this webinar. Seeing no more questions come in, I will now close and hope everybody has a great rest of the day. Thanks, Alex. Thanks, everyone. Thank you. Thanks, everyone.

ASLD

American Association for the Study of Liver Diseases

annual liver meeting

patient engagement

Patient Advisory Group

committees

working groups

patient-friendly guidelines

advocacy