Benefits of Drug Repurposing for Rare Diseases: A Conversation with Ania Korsunska, Castleman Disease Collaborative Network

Rejection and PSC Recurrence After Liver Transplant: A Conversation with Dr. David Goldberg

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.

enFebruary 22, 2024

Meet Dr. Stephen Rossi: A Conversation with the PSC Partners Chief Scientific Officer

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."

enJanuary 16, 2024

Going Through a Liver Transplant: A Conversation Between a Husband & Wife

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."

enSeptember 20, 2023

Post-Liver Transplant Recurrence of PSC: A Conversation with Dr. Palak 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 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.

enAugust 16, 2023

When Your Husband is Your Living Liver Donor: A Conversation with Jessica and Ian Travis

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.

enMay 23, 2023

Improving PSC Diagnosis, Expediting Research, Facilitating Clinical Trials, & more: A Conversation with Dr. Laura Cristoferi

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.

enApril 19, 2023

Benefits of Drug Repurposing for Rare Diseases: A Conversation with Ania Korsunska, Castleman Disease Collaborative Network

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."

enJanuary 18, 2023

Identifying and Mitigating Health Inequalities in PSC: A Discussion with Dr. Kidist Yimam

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.

enNovember 08, 2022

PSC Symptoms, Living Donor Transplant, and More: A Discussion with Nicola Tessier

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.

enSeptember 15, 2022

NIH Team Recruiting Patients for PSC Study: A Discussion with Dr. Theo Heller and Dr. Gracia Viana, NIH Clinical Center

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 33 of the Living with PSC Podcast, Host Niall McKay talks with Hepatologist and Senior Research Clinician Theo Heller, MD, and Hepatology Fellow Gracia Viana, MD, National Institute for Health (NIH) Clinical Center, about their primary sclerosing cholangitis (PSC) study.

"We want to study the evolution of PSC," says Dr. Heller. "We're proposing a study that has the potential of unraveling some of the most fundamental aspects of the disease."

Information about this study will be sent to PSC Partners Registry participants. If you are a PSC patient but have not yet joined the Patient Registry, now would be a good time. www.pscpartnersregistry.org

Questions about the Registry? Email: registrycoordinator@pscpartners.org

enJune 17, 2022

Benefits of Drug Repurposing for Rare Diseases: A Conversation with Ania Korsunska, Castleman Disease Collaborative Network

Living With PSC

About this Episode

Recent Episodes from Living With PSC

Rejection and PSC Recurrence After Liver Transplant: A Conversation with Dr. David Goldberg

Meet Dr. Stephen Rossi: A Conversation with the PSC Partners Chief Scientific Officer

Going Through a Liver Transplant: A Conversation Between a Husband & Wife

Post-Liver Transplant Recurrence of PSC: A Conversation with Dr. Palak Trivedi

When Your Husband is Your Living Liver Donor: A Conversation with Jessica and Ian Travis

Improving PSC Diagnosis, Expediting Research, Facilitating Clinical Trials, & more: A Conversation with Dr. Laura Cristoferi

Benefits of Drug Repurposing for Rare Diseases: A Conversation with Ania Korsunska, Castleman Disease Collaborative Network

Identifying and Mitigating Health Inequalities in PSC: A Discussion with Dr. Kidist Yimam

PSC Symptoms, Living Donor Transplant, and More: A Discussion with Nicola Tessier

NIH Team Recruiting Patients for PSC Study: A Discussion with Dr. Theo Heller and Dr. Gracia Viana, NIH Clinical Center

Benefits of Drug Repurposing for Rare Diseases: A Conversation with Ania Korsunska, Castleman Disease Collaborative Network

Living With PSC

About this Episode

Recent Episodes from Living With PSC

Rejection and PSC Recurrence After Liver Transplant: A Conversation with Dr. David Goldberg

Meet Dr. Stephen Rossi: A Conversation with the PSC Partners Chief Scientific Officer

Going Through a Liver Transplant: ﻿A Conversation Between a Husband & Wife

Post-Liver Transplant Recurrence of PSC: ﻿A Conversation with Dr. Palak Trivedi

When Your Husband is Your Living Liver Donor: A Conversation with Jessica and Ian Travis

Improving PSC Diagnosis, Expediting Research, Facilitating Clinical Trials, & more: A Conversation with Dr. Laura Cristoferi

Benefits of Drug Repurposing for Rare Diseases: A Conversation with Ania Korsunska, Castleman Disease Collaborative Network

Identifying and Mitigating Health Inequalities in PSC: A Discussion with Dr. Kidist Yimam

PSC Symptoms, Living Donor Transplant, and More: A Discussion with Nicola Tessier

NIH Team Recruiting Patients for PSC Study: A Discussion with Dr. Theo Heller and Dr. Gracia Viana, NIH Clinical Center

Going Through a Liver Transplant: A Conversation Between a Husband & Wife

Post-Liver Transplant Recurrence of PSC: A Conversation with Dr. Palak Trivedi