The Lion’s Den, the Rising Tide, and Project 90:90

The PBC foundation is the largest PBC patient support organisation in the world. Their purpose is to have a positive impact on the quality of life of every person affected by PBC.

Robert Mitchell-Thain
CEO, PBC Foundation

June 2026

Christy Rohani-Montez: Robert, you’ve been a force of nature in advocating for patients living with primary biliary cholangitis (PBC). Can you tell us a bit about why you became involved and what the PBC Foundation is about?

Robert Mitchell-Thain: First and foremost, I’m the son of someone who lived with PBC. My journey with my mother took me on a pathway that led me here, as the CEO of the PBC Foundation. My mother was a vibrant, high-powered career woman until her PBC diagnosis changed her life trajectory dramatically. Seeing her journey, and the profound shift that happened when she finally connected with another PBC patient, I knew I had to get involved. Today, the PBC Foundation is the largest PBC support group globally, with over 18,500 members across more than 90 countries.

Christy Rohani-Montez: That personal connection is such a powerful catalyst. This drive also led to the creation of the PBC Summit, which I had the great pleasure of experiencing this year. Can you explain what the PBC Summit is?

Robert Mitchell-Thain: In PBC, the consequences of getting care wrong are so stark that we had to do something bigger. The Summit brings our entire community together: hepatologists, hepatology nurses & pharmacists, industry, patient advocates, regulatory bodies, and others. What makes it unique is that it humanizes everyone. It takes people out of their strict corporate roles and invites them into an authentic conversation to problem-solve for PBC. At the Summit, the stage doesn't hold the power—the floor does. We drop ideas, and the room decides our agenda. Industry representatives hear directly about the barriers patients face, giving them the unvarnished evidence they need to take back to their leadership to drive systemic change.

Christy Rohani-Montez: What are some of the major projects born from this multi-stakeholder model?

Robert Mitchell-Thain: One major initiative is Project 90:90, which operates on the principle that 90% of PBC patients should access 90% of the care standards outlined in clinical guidelines. To help enable this, we created a plain-language guide patients can take into appointments to advocate for themselves. And we’re now auditing to assess the impact.

Another is about mental health. Last year, a patient group suggested focusing on the emotional and mental well-being of PBC patients. There was cross-stakeholder agreement. When industry representatives say mental health is important (even though they have no medications for it) and hepatologists agree (even though they aren't psychologists), you know you have the right collaborative thinkers in the room.

Another initiative I’m incredibly proud of is the Rising Tide Fund. We initially offered travel grants so the patient groups—whether large umbrella organizations or small advocates working from a kitchen table—could attend the Summit. We realized these grants directly benefited the patients they served, so we expanded it. We now fund smaller patient groups directly, removing the heavy burden of seeking industry funding. A rising tide lifts all boats.

Christy Rohani-Montez: What is the Lion’s Den? Can you explain how that flips the traditional dynamic between industry and patient advocates?

Robert Mitchell-Thain: We are all used to ad boards where industry brings in one patient group at a time. We reversed that. We put over 20 patient advocacy groups from around the world into one room. We agree on our questions as a collective, and then we invite one pharmaceutical company in at a time to answer them. It is a purely patient-led initiative holding industry accountable. In a room full of powerful, expert patients, how a company avoids a question is judged just as closely as how they answer it. It has completely changed the game in PBC by demanding transparent, authentic partnerships.

Christy Rohani-Montez: Any last words of advice for the rare disease community?

Robert Mitchell-Thain: I think the Summit model absolutely needs to be done in other disease areas. You achieve massive, big-picture shifts through incrementally great gains in multiple directions. The value is truly immeasurable. It builds genuine trust and authenticity so that people enter the room not as their titles or roles, but just as individuals with experience, knowledge, and the will to make a difference.