Friends of the PBC Foundation

16/05/2026

📍Portugal

Our partners CBP Portugal are hosting a meeting all about the fatigue patients experience living with primary biliary cholangitis. Fatigue can be so debilitating to patients.

Nem tudo o que parece cansaço é apenas cansaço.

A fadiga na CBP é um dos sintomas mais impactantes e menos compreendidos.
Neste encontro, o tema será abordado de forma clara e clínica pelo Prof. Doutor Filipe Nery.

Compreender é o primeiro passo para melhorar.

📍SRNOM - Norte Médico, R. Delfim Maia 405, 4200-256 Porto
🗓 16 de maio de 2026

👉 As inscrições ainda estão abertas
https://forms.gle/Lnzu8FJHMh4WiX6PA
A participação é gratuita, mas sujeita a inscrição prévia.

Evento promovido pela CBP Portugal, com o apoio científico da Associação Portuguesa para o Estudo do Fígado, Núcleo de Estudos das Doenças do Fígado da SPMI e Prof. Doutor Filipe Nery - Clínica do Fígado, e o patrocínio da Ipsen e da Gilead Sciences.

14/05/2026

We are excited for our partners and friends in the UK to have access to linerixibat. Severe pruritis can be such a devastating side effect for patients living with primary biliary cholangitis. All patients around the world deserve access to life-changing medications. 💜

Important news for the PBC community 💜

The MHRA has approved linerixibat for the treatment of cholestatic itch in adults living with PBC. This follows recent approval by the U.S. Food and Drug Administration (FDA), marking an important milestone for the global PBC community.

This approval represents an important step forward and offers real hope for people affected by this difficult symptom.

Our Head of Patient Services, Mo Christie, shared:
“Please do not underestimate the impact of PBC itch. It can be exhausting, isolating, and completely overwhelming at times. Having experienced severe itch myself, I know how desperately people have needed more effective treatment options. Seeing this news was incredibly emotional for me personally, because I know what this symptom takes from people and how long so many in our community have waited for progress in this area. This approval is an important moment and offers real hope for the future.”

You can read more, including what happens next regarding NHS access and NICE review, in our full article https://www.pbcfoundation.international/mhra-approves-linerixibat-for-the-treatment-of-itch-in-pbc/

03/05/2026

Don't forget that the next US Community Cafe is on Wednesday, May 6th! These virtual meetings are an incredible opportunity for patients living with primary biliary cholangitis to connect with other patients living with this rare disease. It's the perfect place to feel seen, be heard, and find support from others who truly understand the experience of living with PBC. Be sure to sign up and register with the PBC Foundation to have access to these inspirational virtual meetings!

Community Cafés are designed to help reduce isolation and bring people together in a relaxed, welcoming environment.

They provide an opportunity to connect with others impacted by PBC, share conversation and community and learn about the services and support available through the PBC Foundation.

In-person cafés are hosted by staff or volunteers, and online cafés are hosted by staff.
Here are the Community Café meetings coming up over the next week:

☕ Wednesday 06 May: US Online Community Café | 8am - 9am PT | 9am - 10am MT | 10am - 11am CT | 11am - 12pm ET
☕ Wednesday 06 May: Online Community Café | 6pm -7pm UK time

Visit our Events webpage for more information: https://www.pbcfoundation.org.uk/events/

You can read more about our café’s here: https://www.pbcfoundation.international/connecting-through-community-cafes/

03/05/2026

Our President, Danielle, had the honor to speak alongside PBC specialists, Dr. Gish and Dr. Kushner. This CME focused on new medications available to treat primary biliary cholangitis and recommendations for symptom management. Check it out to see how living with primary biliary cholangitis has affected Danielle. Thank you to the PBC Foundation and Medscape for organizing this event. And special thanks to Mirum and Ipsen for sponsoring this CME at Digestive Disease Week® (DDW®).

01/05/2026

If you are attending Digestive Disease Week® (DDW) in Chicago this weekend, don't forget to register for this CME tomorrow. Dr. Gish and Dr. Kushner have an excellent PBC presentation planned. And our President , Danielle, will be sharing her journey living with primary biliary cholangitis and how it has affected her life. Thank you to the PBC Foundation and Medscape for organizing this discussion.

https://events.medscapelive.org/website/94494/?fbclid=IwdGRjcARhvahjbGNrBGG9m2V4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHqSZVmAI3uJvMdbPTQfjZyEnhU59YxhKk_kzb7inwW59lq4Ftn-zsHXhXSzV_aem_SBhG66aPdrb554BaYRfAaw

28/04/2026

Are you attending Digestive Disease Week® (DDW®) ? Be sure to sign up for "PBC in Practice : Real-World Case Challenges and Solutions." Our President, Danielle, will be speaking alongside Dr. Gish and Dr. Kushner. You can find the details and registration here. Thank you to Medscape and the PBC Foundation for organizing this CME.

https://events.medscapelive.org/website/94494/

24/04/2026

What an absolute pleasure the last week has been for Friends of the PBC Foundation to participate at the 2026 International PBC Summit hosted by the PBC Foundation. We have had incredible discussions bringing insight and inspiration amongst the over 20 different patient advocacy groups at the Summit. We know that making real change for patients involves all different stakeholders working together with the patient voice at the front and center. We have made progress on previous Summit ideas and have worked towards developing new ideas that will impact patients across the globe. We feel deeply revered to sit at the table and can't wait to see what's next for the primary biliary cholangitis community.

23/04/2026

The last 4 days have been insightful, powerful, exciting and hopeful. We are looking forward to continued collaboration with these incredible patient advocacy groups in the future!

Day 4 marked a powerful close to the PBC International Summit.

Building on the foundations from Days 1 and 2, today focused on reflection, collaboration, and action amongst Patient Advocacy Groups.

We were proud to celebrate and discuss International PBC Day, recognising the vital role of Patient Advocacy Groups worldwide in driving impact and change.

23/04/2026

Today is Day 4 at the 2026 International PBC Summit in Edinburgh, Scotland hosted by the PBC Foundation. Today is all about the patient advocacy groups. We are among over 20 PAGs from around the world sharing how our foundation has impacted patients living with primary biliary cholangitis.

Our Director of Strategic Initiatives, Ons, discussed that our biggest goal of last year was hosting our inaugural Patient Conference in 2025. We hosted over 100 attendees from 17 different states at this inspirational event. We received such positive feedback from the conference that we hope to build upon in the future.

We are looking forward to continuing our collaboration with patient advocacy groups across the globe to highlight the patient voice in the PBC space.

22/04/2026

"It's my full circle moment - being back here as President of Friends of the PBC Foundation with my mentor by my side." - Danielle, President of Friends of the PBC Foundation

Yesterday at the 2026 International PBC Summit hosted by the PBC Foundation, our President, Danielle, was asked to speak on a panel about how collaboration plays a vital role in growing patient advocacy groups.

When introducing herself and explaining how she became involved in patient advocacy, she explained how working as a Respiratory Therapist in an underprivileged community changed her perspective on healthcare. Her experience working on the Frontline during the Covid-19 pandemic really showed her the disparities that patients face in the United States.

The PBC Foundation was the first patient advocacy group she found after her diagnosis. Speaking at the Summit as President of Friends of the PBC Foundation was her full-circle moment in her advocacy journey. The CEO of the PBC Foundation, Robert Mitchell-Thain has been her mentor over the last few years. He has helped her learn how to become a better advocate for patients living with primary biliary cholangitis. And she is beyond humbled at the opportunity to help patients in the same way that Robert and the PBC Foundation helped her after her diagnosis.

21/04/2026

We are here at Day 2 of the International PBC Summit hosted by the PBC Foundation. This morning's panel discussion is about the influence of change in the PBC community. When discussing major barriers that patients experience, Joana Pina from CBP Portugal said it best, "We are just the patient." Patients tend to not feel empowered, especially at the start of their PBC journey. Patients can feel like they are not as respected and not being viewed on the same level as the clinician and as the regulators. Change starts with us, the patients.