Friends of the PBC Foundation

27/09/2026

The next US Community Cafe is on Wednesday, September 30th! The Community Cafe is a wonderful opportunity to connect with other US patients living with PBC. Be sure to register with the PBC Foundation to attend the virtual meeting!

17/09/2026

🎯 𝗕𝗿𝗮𝗶𝗻 𝗳𝗼𝗴 𝗶𝗻 𝗣𝗿𝗶𝗺𝗮𝗿𝘆 𝗕𝗶𝗹𝗶𝗮𝗿𝘆 𝗖𝗵𝗼𝗹𝗮𝗻𝗴𝗶𝘁𝗶𝘀 (𝗣𝗕𝗖) 𝗶𝘀 𝗺𝗼𝗿𝗲 𝘁𝗵𝗮𝗻 𝗷𝘂𝘀𝘁 𝗮 𝗳𝗼𝗿𝗴𝗲𝘁𝗳𝘂𝗹 𝗺𝗼𝗺𝗲𝗻𝘁. 🧠💨For individuals living with PBC, brain fog is an invisible barrier that disrupts the simplest daily tasks. It isn't just "tiredness"—it is a heavy cognitive haze that forces patients to work twice as hard to accomplish routine activities.

𝗛𝗼𝘄 𝗣𝗕𝗖 𝗯𝗿𝗮𝗶𝗻 𝗳𝗼𝗴 𝘀𝗵𝗼𝘄𝘀 𝘂𝗽 𝗶𝗻 𝗱𝗮𝗶𝗹𝘆 𝗹𝗶𝗳𝗲:
• Walking into a room and completely forgetting why you are there.
• Losing your train of thought mid-sentence or struggling to find basic words.
• Staring at a grocery list or a recipe and feeling unable to process the steps.
• Forgetting if you already took your daily medication or missed a dose.
• Needing to reread the same paragraph multiple times just to understand it.

Because others look at a patient and see someone who "looks fine," these struggles are frequently misunderstood. We stand with patients to ensure the invisible realities of chronic liver disease are seen and validated. 𝗬𝗼𝘂 𝗮𝗿𝗲 𝗻𝗼𝘁 𝗶𝗻𝘃𝗶𝘀𝗶𝗯𝗹𝗲.

💬 𝗧𝗼 𝗼𝘂𝗿 𝗣𝗕𝗖 𝗰𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆: Which of these daily challenges resonates the most with you? What tricks do you use to manage them? Share your story in the comments below to help others understand.

14/09/2026

𝗣𝗿𝗼𝗳𝗼𝘂𝗻𝗱 𝗳𝗮𝘁𝗶𝗴𝘂𝗲 𝗶𝗻 𝗣𝗕𝗖 𝗶𝘀𝗻’𝘁 𝗷𝘂𝘀𝘁 𝗯𝗲𝗶𝗻𝗴 𝘁𝗶𝗿𝗲𝗱—𝗶𝘁 𝗶𝘀 𝗮 𝗵𝗲𝗮𝘃𝘆, 𝗶𝗻𝘃𝗶𝘀𝗶𝗯𝗹𝗲 𝗲𝘅𝗵𝗮𝘂𝘀𝘁𝗶𝗼𝗻 𝘁𝗵𝗮𝘁 𝘁𝘂𝗿𝗻𝘀 𝗲𝘃𝗲𝗿𝘆𝗱𝗮𝘆 𝘁𝗮𝘀𝗸𝘀 𝗶𝗻𝘁𝗼 𝗮 𝗺𝗼𝘂𝗻𝘁𝗮𝗶𝗻 𝘁𝗼 𝗰𝗹𝗶𝗺𝗯, 𝗹𝗲𝗮𝘃𝗶𝗻𝗴 𝘆𝗼𝘂 𝘁𝗼 𝘄𝗮𝘁𝗰𝗵 𝗹𝗶𝗳𝗲 𝗳𝗿𝗼𝗺 𝘁𝗵𝗲 𝘀𝗶𝗱𝗲𝗹𝗶𝗻𝗲𝘀.

A good night's sleep won't fix it, and it has nothing to do with personal willpower. It is a relentless symptom that deeply impacts every part of a patient's world.

How 𝗽𝗿𝗼𝗳𝗼𝘂𝗻𝗱 𝗳𝗮𝘁𝗶𝗴𝘂𝗲 changes daily life:

•𝗦𝘁𝗲𝗮𝗹𝘀 𝘆𝗼𝘂𝗿 𝗰𝗮𝗿𝗲𝗲𝗿: Brain fog makes it incredibly difficult to focus and maintain a normal work schedule.

•𝗙𝗼𝗿𝗰𝗲𝘀 𝗰𝗮𝗻𝗰𝗲𝗹𝗲𝗱 𝗽𝗹𝗮𝗻𝘀: Missing out on family milestones and social events brings a crushing weight of guilt.

•𝗘𝗿𝗮𝘀𝗲𝘀 𝗶𝗻𝗱𝗲𝗽𝗲𝗻𝗱𝗲𝗻𝗰𝗲: Everyday chores like grocery shopping or cooking feel like running an absolute marathon.

•𝗛𝗲𝗮𝘃𝘆 𝗺𝗲𝗻𝘁𝗮𝗹 𝘁𝗼𝗹𝗹: Waking up completely drained day after day triggers deep anxiety about the future.

•𝗙𝗮𝗱𝗲𝘀 𝘆𝗼𝘂𝗿 𝗶𝗱𝗲𝗻𝘁𝗶𝘁𝘆: Giving up the hobbies and passions you love leaves you feeling like a stranger to yourself.

You are not lazy, and you are not imagining it. 𝗪𝗲 𝘀𝗲𝗲 𝘆𝗼𝘂𝗿 𝗶𝗻𝘃𝗶𝘀𝗶𝗯𝗹𝗲 𝘀𝘁𝗿𝘂𝗴𝗴𝗹𝗲, 𝘄𝗲 𝗯𝗲𝗹𝗶𝗲𝘃𝗲 𝘆𝗼𝘂, 𝗮𝗻𝗱 𝘄𝗲 𝘀𝘁𝗮𝗻𝗱 𝘄𝗶𝘁𝗵 𝘆𝗼𝘂. 💜

💬 𝗧𝗼 𝗼𝘂𝗿 𝗣𝗕𝗖 𝗰𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆: 𝗛𝗼𝘄 𝗵𝗮𝘀 𝗽𝗿𝗼𝗳𝗼𝘂𝗻𝗱 𝗳𝗮𝘁𝗶𝗴𝘂𝗲 𝗶𝗺𝗽𝗮𝗰𝘁𝗲𝗱 𝘆𝗼𝘂𝗿 𝗱𝗮𝗶𝗹𝘆 𝗿𝗼𝘂𝘁𝗶𝗻𝗲, 𝗮𝗻𝗱 𝘄𝗵𝗮𝘁 𝗶𝘀 𝗼𝗻𝗲 𝘀𝗺𝗮𝗹𝗹 𝘄𝗮𝘆 𝘆𝗼𝘂 𝗽𝗿𝗼𝘁𝗲𝗰𝘁 𝘆𝗼𝘂𝗿 𝗲𝗻𝗲𝗿𝗴𝘆? 𝗟𝗲𝘁’𝘀 𝘀𝗵𝗮𝗿𝗲 𝗮𝗻𝗱 𝘀𝘂𝗽𝗽𝗼𝗿𝘁 𝗲𝗮𝗰𝗵 𝗼𝘁𝗵𝗲𝗿 𝗶𝗻 𝘁𝗵𝗲 𝗰𝗼𝗺𝗺𝗲𝗻𝘁𝘀 𝗯𝗲𝗹𝗼𝘄.

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13/09/2026

𝗧𝗼𝗱𝗮𝘆 𝗶𝘀 𝗜𝗻𝘁𝗲𝗿𝗻𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗣𝗕𝗖 𝗗𝗮𝘆, 𝗮𝗻𝗱 𝗙𝗿𝗶𝗲𝗻𝗱𝘀 𝗼𝗳 𝘁𝗵𝗲 𝗣𝗕𝗖 𝗙𝗼𝘂𝗻𝗱𝗮𝘁𝗶𝗼𝗻 𝘀𝘁𝗮𝗻𝗱𝘀 𝘂𝗻𝗶𝘁𝗲𝗱 𝘄𝗶𝘁𝗵 𝗼𝘂𝗿 𝗰𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆! 💜

What is 𝗣𝗿𝗶𝗺𝗮𝗿𝘆 𝗕𝗶𝗹𝗶𝗮𝗿𝘆 𝗖𝗵𝗼𝗹𝗮𝗻𝗴𝗶𝘁𝗶𝘀 (𝗣𝗕𝗖)? It is a rare, chronic 𝗮𝘂𝘁𝗼𝗶𝗺𝗺𝘂𝗻𝗲 𝗹𝗶𝘃𝗲𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 where the immune system damages the small bile ducts within the liver. This causes bile to build up, leading to inflammation and potential scarring over time.

Living with a rare disease can feel deeply isolating. Symptoms like profound fatigue and severe itching are often completely invisible to the outside world, leading many patients to feel unseen.

At 𝗙𝗿𝗶𝗲𝗻𝗱𝘀 𝗼𝗳 𝘁𝗵𝗲 𝗣𝗕𝗖 𝗙𝗼𝘂𝗻𝗱𝗮𝘁𝗶𝗼𝗻, our mission is to ensure that no patient walks this path alone. Today, we want to remind you: 𝗬𝗼𝘂 𝗮𝗿𝗲 𝗻𝗼𝘁 𝗶𝗻𝘃𝗶𝘀𝗶𝗯𝗹𝗲, 𝗮𝗻𝗱 𝘆𝗼𝘂 𝗮𝗿𝗲 𝗻𝗼𝘁 𝗮𝗹𝗼𝗻𝗲. Our dedicated advocacy is focused entirely on amplifying patient voices, raising critical awareness, and highlighting the real, lived experience of this condition to foster a more understanding world.

𝗛𝗼𝘄 𝘆𝗼𝘂 𝗰𝗮𝗻 𝘀𝘁𝗮𝗻𝗱 𝘄𝗶𝘁𝗵 𝘂𝘀 𝘁𝗼𝗱𝗮𝘆:

•𝗥𝗮𝗶𝘀𝗲 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀: Share this post to help friends and family understand what PBC really is.

•𝗟𝗶𝘀𝘁𝗲𝗻 & 𝗦𝘂𝗽𝗽𝗼𝗿𝘁: If someone you know is living with a chronic illness, ask them how they are really feeling—and believe them.

•𝗖𝗼𝗻𝗻𝗲𝗰𝘁: Reach out to our community network for trusted support, resources, and a space where your experience is truly understood.

13/09/2026

𝗧𝗼𝗱𝗮𝘆, 𝗦𝗲𝗽𝘁𝗲𝗺𝗯𝗲𝗿 𝟭𝟯, 𝗶𝘀 𝗜𝗻𝘁𝗲𝗿𝗻𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗣𝗿𝗶𝗺𝗮𝗿𝘆 𝗕𝗶𝗹𝗶𝗮𝗿𝘆 𝗖𝗵𝗼𝗹𝗮𝗻𝗴𝗶𝘁𝗶𝘀 (𝗣𝗕𝗖) 𝗗𝗮𝘆! As Friends of the PBC Foundation, we stand proudly alongside the global community to ensure that no one fighting this rare autoimmune liver disease feels invisible.

Every journey with PBC is unique. Whether you are a patient navigating a diagnosis, a specialist, a researcher, or a caregiver supporting a loved one, your voice matters. Through powerful partnerships, global advocacy, and mutual support, we are bringing real hope, raising vital awareness, and highlighting the patient experience every single day.

Together with over 20 international patient advocacy groups, the pharmaceutical industry, and specialists worldwide, we say loud and clear: 𝗬𝗼𝘂 𝗮𝗿𝗲 𝗻𝗼𝘁 𝗮𝗹𝗼𝗻𝗲. 𝗬𝗼𝘂 𝗮𝗿𝗲 𝗻𝗼𝘁 𝗶𝗻𝘃𝗶𝘀𝗶𝗯𝗹𝗲. 🤝💜

13/09/2026

11/09/2026

📢 𝗟𝗔𝗦𝗧 𝗖𝗛𝗔𝗡𝗖𝗘 to register for virtual attendance is Friday, September 11!

The 2026 Patient Conference hosted by the PBC Foundation is this weekend! Be sure to register to attend virtually for FREE for this Saturday and Sunday, September 12 and 13. The Patient Conference is an excellent opportunity to learn all about primary biliary cholangitis! We hope to see you there! 💜

JOIN US ONLINE!

Virtual booking is open for the PBC Foundation Patient Conference 2026, taking place in Edinburgh on 12–13 September.

Can’t be with us in person? You can still join us online for the main conference sessions across Saturday and Sunday.

Our programme is now available, so you can take a look at what’s happening across the weekend — including sessions on understanding PBC and treatments, managing symptoms, living well with PBC and the latest research.

You’ll also be able to have your say throughout the conference using Slido, and virtual attendees can choose to join our Online Community Café during Saturday’s first breakout session.

View the programme, find out more and register for virtual attendance on our conference page:

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.

07/09/2026

Thank you to our team for turning passion into progress and advocacy into action. 💜

Here is your reminder to 𝘂𝗻𝘄𝗶𝗻𝗱 today:

•𝗟𝗼𝗴 𝗼𝗳𝗳. Put your work notifications on silent.

•𝗖𝗵𝗶𝗹𝗹 𝗼𝘂𝘁. Spend time with family, read a book, or take a nap.

•𝗥𝗲𝗰𝗵𝗮𝗿𝗴𝗲. Guard your peace and reset for the week ahead.

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."