Friends of the PBC Foundation

22/08/2026

Be sure to register for this week's events!

20/08/2026

Don't forget to register to virtually attend the PBC Foundation Patient Conference next month on September 12th and 13th! The timing is all in the UK so please pay attention to the time change. The Patient Conference is packed full of information for patients and care givers. There is also an option to attend a virtual Community Cafe on Saturday the 12th to connect with other patients living with primary biliary cholangitis. Head to the link to sign up and register!

ONE MONTH TO GO!

In just one month, our PBC Foundation Patient Conference 2026 will be bringing our community together in Edinburgh — and today we’re delighted to open virtual registration!

Can’t join us in person? You can still be part of the weekend from wherever you are.

Main conference sessions will be streamed live on Saturday 12 and Sunday 13 September, with opportunities to ask questions live using Slido.

And on Saturday, virtual attendees can also choose to join our Online Community Café during the first breakout session — giving you a chance to meet and connect with others in the PBC community.

Virtual registration is open now, and we’ll send registered attendees all the joining information they need before the conference.

Full details and virtual registration here https://www.pbcfoundation.international/events/patient-conference-2026/

Virtual registration closes at 5pm (UK time) on Friday 11 September 2026.

Wherever you’re joining us from, You Are Not Alone. 💜

19/08/2026

We are so proud of our President, Danielle, for winning the 2026 Rookie of the Year Social Health Award for Health Union! Danielle has played a major role for Friends of the PBC Foundation as we transition into our next era of advocacy. We are looking forward to our future with Danielle's guidance. Please be sure to click on the link to read some of her columns about living with primary biliary cholangitis. 💜

🏆Congratulations to our 2026 Rookie of the Year, Danielle Alstat! You can find her on our PBC community here: https://primarybiliarycholangitis.net/community-health-leaders/danielle-alstat

Diagnosed with primary biliary cholangitis at 31, Respiratory Therapist Danielle turned her dual perspective as a clinician and patient into a passion for advocacy. She now leads support groups, works with non-profits, and shares her story to combat healthcare disparities. Today, she amplifies patient voices globally, including serving as an FDA patient representative for PBC.

11/06/2026

We had a powerful experience at the World Orphan Drugs Congress in Boston. Thank you to Rare Disease Advisor for inviting Danielle, the President of Friends of the PBC Foundation to speak on the panel "Beyond Awareness: Translating Lived Experience into Regulatory Data." The patient voice and patient experience should be at the forefront of all clinical trials.

Danielle said, "With primary biliary cholangitis, we have to be on some form of treatment to prevent our disease from progressing. With long-term placebos in confirmatory clinical trials, patients have to be off treatment and on placebos for 8 or more years risking liver cirrhosis, failure, and even death. If I was your mother, your sister, your daughter, your wife, or your friend, would you want me to be on a placebo that long?" The resounding answer in the audience was "No."

Hopefully regulators will begin to listen to the patients and utilize Real World Evidence as a way to bridge the gap when it comes to long-term placebos and patients living with rare disease.

11/06/2026

We are here in Boston for wonderful conversations hosted by Trialport regarding clinical trials and patients living with rare disease. Joana Pina, the President of CBP Portugal, our friends and partners, is speaking about her lived experience with primary biliary cholangitis. Thank you Keith Berelowitz for helping to put this together and making a huge difference for patients living with rare disease in the clinical trial space.

10/06/2026

Danielle, President of Friends of the PBC Foundation, will be speaking tomorrow at the World Orphan Drug Congress.

📍Boston, MA
Hall C : Track 1 - Rare Advocacy
🗓️ Tomorrow, June 11
⏰2:00-2:40 pm EST

Here is what she had to say, "See me tomorrow at World Orphan Drug Congress speaking about clinical trial regulations and the unethical challenges faced by patients living with primary biliary cholangitis. This is a very important topic to me since being the FDA PBC Patient Representative on the GIDAC committee regarding Ocaliva in September 2024. It is time for regulators to put the patient's lived experience first when it comes to regulatory data and standards. I will be speaking about the work that has come out of the International PBC Summit that the PBC Foundation, Friends of the PBC Foundation, and the PBC community as a whole across the globe have been working on for the last several years. It's clear that patients, patient advocacy groups, clinicians, biostatisticians, the pharmaceutical industry and all stakeholders in this community want an end to long-term placebo trials when it comes to PBC. Let's work together to make changes for the better in the rare disease community. Thank you Rare Disease Advisor for giving me this platform and an opportunity to be heard."

29/05/2026

The President of Friends of the PBC Foundation , Danielle, will be speaking at World Orphan Drug Congress in Boston, MA on June 11 on behalf of Rare Disease Advisor. The patient voice should be at the center of regulatory data and clinical trials. Hear from 3 patients with different rare diseases regarding regulatory data and the patients lived experience. Check out the event details and we hope to see you there!

https://app.terrapinn.com/event/world-orphan-drug-congress-usa-2026/planning/UGxhbm5pbmdfNDQ2MzAwNw==

28/05/2026

Stop by and see our partners at EASL for a chat about primary biliary cholangitis.

21/05/2026

Our President, Danielle, recently had the opportunity to share her experiences as a patient living with primary biliary cholangitis. Please check out her clips to see what it's like living with PBC. Thank you Health Union LLC for putting a spotlight on primary biliary cholangitis. It is estimated that over 100,000 Americans are living with PBC.

Watch "Real Talk," a video series on living with primary biliary cholangitis (PBC). Danielle and Lisa share how they manage unrelenting fatigue and symptoms.

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.