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In this episode, Niall speaks with Ricky Safer and Audra Flemming from PSC Partners about a remarkable moment for the PSC community: Ricky's recognition by AASLD, growing research momentum, and the power of patient-led advocacy. They discuss new developments in PSC and cholangiocarcinoma blood tests, the work of the PSC Partners International Collaborative Research Network, and why patient voices are becoming central to research and clinical trial design. Audra and Ricky also share news about the PSC Partners Conference taking place this November in Denver, in partnership with AASLD. Niall admits he kept saying "wow" during the conversation, because there was so much hopeful news: international collaboration, patient-led research, progress in symptom-focused drug development, and a community that continues to shape the future of PSC care. In This Episode Ricky's AASLD award and what it means for the PSC community New blood-test developments for PSC and cholangiocarcinoma The PSC Partners International Collaborative Research Network Patient-led research and the importance of lived experience The November PSC Partners Conference in Denver with AASLD Hopeful developments in PSC symptom treatment Links PSC Partners: https://pscpartners.org

Niall McKay talks to Harriet Medeley about her diagnosis of Primary Sclerosing Cholangitis (PSC) and how it inspired her to write Outpatient, an award-winning comedy play which opened in London this month. They discuss how her diagnosis, her life as an artist and mother and turning a life changing disease into art and comedy.

Host Niall McKay speaks with Dr. Sharon Millen, a health psychologist at Queen's University Hospital, Belfast in Northern Ireland. Dr. Millen, a two-time liver transplant recipient, completed her PhD on psychological well-being in liver transplant patients. Her research found a significant link between physical recovery and mental well-being. Niall and Dr. Millen also share their personal experiences with liver transplant, discussing the psychological impact on patients and emphasizing the importance of mental preparation, social support, and counseling. They highlight the challenges faced both before and after transplant, including social isolation, financial difficulties, and post-operative complications.

In episode 45 of the Living with PSC Podcast, Host Niall McKay talks with Tom Karlsen, MD, PhD, Co-Chair of the 2024 PSC Partners 20th Anniversary Annual Conference, and Clinical Specialist in Internal Medicine and Gastroenterology, Oslo University Hospital, Norway. "I've worked on PSC for more than 20 years, and that aligns nicely with the 20-year anniversary of the Conference, because I've seen PSC Partners throughout this entire career." Dr. Karlsen has partnered with the PSC Partners' team to create a dynamic agenda for the Conference. "I am fortunate to be co-chairing this meeting together with PSC Partners," says Dr. Karlsen. "(The Conference) is a mixture of basic knowledge and the research agenda as it currently stands," adding that cutting-edge research results are also on the agenda. "This is a big honor for me."  The conversation also covers the gut microbiome, the benefits of slowing PSC progression, and the search for a cause. "I think to achieve a full-stop in PSC development, you need to know the cause," he says. "There's alot of activity in this space for the first time in many, many years. So, it will be an exciting 3-5 years from now." Each month, this podcast explores the latest research and knowledge about PSC. From patient stories to the latest research updates from PSC experts to collaborations that are necessary to find better treatments and a cure, this podcast has it all!

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all! In episode 44 of the Living with PSC Podcast, Host Niall McKay talks with Jesse Kirkpatrick, Ph.D., a third-year Harvard University medical student, researcher at MIT, PSC Partners board member, and family member of a person with PSC.    They discuss Dr. Kirkpatrick's research on early detection of Cholangiocarcinoma, a rare cancer for which people with PSC are susceptible. It is often difficult to treat in our population, because Cholangiocarcinoma is typically detected late in people with PSC. Kirkpatrick and others are working to develop better diagnostic and screening tests for bile duct cancers to enable earlier detection and better outcomes for patients. In 2023, he was the winner of the American Medical Association Research Challenge for his work in this area.

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all! In episode 43 of the Living with PSC Podcast, Host Niall McKay talks with Joanne Hatchett, PSC Caregiver and Medical Science Liaison for PSC Partners Seeking a Cure, about the 2023 PSC Partners Annual Conference held in June in Henderson, Nevada.   "I just thought the Conference was the very best thing that has happened in a very long time," said Hatchett. "We found so much synergy in people being together."   This podcast discussion also includes information for newcomers, the importance of Conference peer group meetings, the value of networking between researchers, clinicians, patients, and caregivers, the tremendous educational and social opportunities offered, and much more.

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all! In episode 42 of the Living with PSC Podcast, Host Niall McKay talks with Dr. David Goldberg, Transplant Hepatologist and Associate Professor of Medicine in the Division of Digestive Health and Liver Disease at the University of Miami Miller School of Medicine.   The two discuss post-transplant organ rejection and PSC recurrence after a liver transplant, which happens around 30 percent of the time to post-transplant PSC patients.

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all! In episode 41 of the Living with PSC Podcast, Host Niall McKay talked with Dr. Stephen Rossi, Chief Scientific Officer for PSC Partners. In addition to Dr. Rossi's background, the two discussed PSC Partners research priorities and the progress of work being done worldwide to find treatments and a cure for PSC.   "It's exciting to not only take what I've learned on the industry side and the clinical side, but actually work directly with the patient community," says Dr. Rossi. "There's alot of positive things evolving. I'd say, in the next five years, we're going to see a big breakthrough."

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all! In episode 40 of the Living with PSC Podcast, Host Niall McKay and his wife Marissa Aroy give us a rare peek behind the microphone as they discuss Niall's recent liver transplant.   "We're doing a very unusual podcast today, because we're talking about myself," says Niall. "We don't really like to be on camera or in front of the microphone anymore, but we will make a special occasion of this for you to tell you what it was like for me to go and have a transplant."

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all! In episode 39 of the Living with PSC Podcast, Host Niall McKay has an in-depth conversation with Dr. Palak Trivedi, BSc (hons), MBBS, MRCP Gastro (UK), PhD, Associate Professor, and Honorary Consultant Hepatologist, University of Birmingham, UK. They talk about the recurrence of PSC in people who have received a liver transplant. They also discuss the differences between PSC and PBC, clinical trials searching for treatments and a cure, studies exploring the cause of PSC, and how IBD, particularly colitis, may reduce the risk of post-transplant recurrence. "In retrospective studies, our group and others around the world have found that people who have colitis and have had their large bowel removed (and have kept their stoma), lower their risk of developing recurrence of PSC," says Dr. Trivedi.

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all! In episode 38, Host Niall McKay has an illuminating conversation with Jessica and Ian Travis about Jessica's journey with PSC, her search for a liver, and how her husband Ian became her live donor.   "I had alot of issues when I was first listed (for a liver transplant). I was having alot of panic attacks. I couldn't figure out why I was having them. I think alot of it was not having control over the situation." says Jessica.   According to the couple, their story involves lots of assistance and kindness from others along the way.

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all! In epidode 37 of the Living with PSC Podcast, Host Niall McKay talks with Dr. Laura Cristoferi, hepatologist, clinical research fellow, and PhD candidate, at Milano Bicocca University in Italy. They discuss PSC diagnosis and disease progression, the importance of PSC registries to share knowledge and improve research, various PSC therapies, and more.   "We are building a national PSC registry in Italy," says Dr. Cristoferi. "We are trying to build a network in order to improve knowledge for diagnosis and management of this disease...and in order to have a rapid connection in case of clinical trials. Using this registry, we will have precise epidemiological data."   Dr. Cristoferi highlights various research endeavors including her project aimed at discovering biomarkers to enable a more precise determination of PSC disease progression over time.

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all! In episode 36 of the Living with PSC Podcast, Host Niall McKay talks about drug repurposing with Ania Korsunska, MA, Biomedical Leadership Fellow and ROADMAP Project Lead, Castleman Disease Collaborative Network (CDCN).   "(Drug repurposing) is an opportunity to utilize existing drugs that are in development or already approved and redirect for the rare disease space," says Korsunska. "It's potentially cheaper than novel drug development, potentially faster. It's potentially easier to get these drugs into a position that a doctor can actually prescribe them."

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all!   In episode 35 of the Living with PSC Podcast, Host Niall McKay talks with Dr. Kidist Yimam, Medical Director of the Autoimmune Liver Disease Program at California Pacific Medical Center. She is also a member of the PSC Partners Diversity, Equity, and Inclusion Working Group. In this podcast, they discuss health inequalities in PSC, including provider bias, lack of access to care, delay in diagnosis, importance of diversity in clinical trials, and more.   "It is not unusual to hear from some of our minority patients that they've been told by other providers that PSC affects people who are Caucasian, and they shouldn't be affected by the disease, leading to a delay in diagnosis of PSC, and even putting them at risk of poorer outcomes," says Dr. Yimam.   McKay and Yimam also discuss how including a diverse group of people in PSC natural history studies will allow researchers to better understand how genetics, socio-economic factors, cultural biases, and more affect the search for treatments and a cure for PSC. To make that happen, diversity is needed within the PSC Partners Patient Registry.

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all!   In episode 34 of the Living with PSC Podcast, Host Niall McKay talks with Nicola Tessier, a post-transplant PSC patient, about her PSC diagnosis, dealing with symptoms, MELD score issues for PSC patients, receiving a living donor liver transplant from her brother, having children post-transplant, and much more.   "The need for a liver transplant was heavily driven by my (increased) risk for cholangiocarcinoma," says Tessier. "On paper, I looked less sick than I really was. So, the option of a living donor was a better fit for me."   She received 56% of her younger brother's liver. "It was a very special day," she says.