Friends of the PBC Foundation

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.

07/09/2026

07/09/2026

This 𝗜𝗻𝘁𝗲𝗿𝗻𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗣𝗿𝗶𝗺𝗮𝗿𝘆 𝗕𝗶𝗹𝗶𝗮𝗿𝘆 𝗖𝗵𝗼𝗹𝗮𝗻𝗴𝗶𝘁𝗶𝘀 𝗠𝗼𝗻𝘁𝗵, we stand united with the PBC Foundation, over 20 international patient advocacy groups, medical specialists, and industry partners to deliver one clear message: 𝗬𝗼𝘂 𝗔𝗿𝗲 𝗡𝗼𝘁 𝗜𝗻𝘃𝗶𝘀𝗶𝗯𝗹𝗲.

https://youtube.com/shorts/-ggJkQEJn2A?is=HZDpmuClfn72tMrp

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

07/09/2026

Check out this week's upcoming schedule.

02/09/2026

𝗣𝗿𝗶𝗺𝗮𝗿𝘆 𝗕𝗶𝗹𝗶𝗮𝗿𝘆 𝗖𝗵𝗼𝗹𝗮𝗻𝗴𝗶𝘁𝗶𝘀 (PBC) is a rare autoimmune disease that damages the liver's bile ducts. To honor 𝗜𝗻𝘁𝗲𝗿𝗻𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗣𝗕𝗖 𝗠𝗼𝗻𝘁𝗵 this September, we are excited to look back at a major milestone in our mission to raise awareness.

Last year, the 𝗙𝗿𝗶𝗲𝗻𝗱𝘀 𝗼𝗳 𝘁𝗵𝗲 𝗣𝗕𝗖 𝗙𝗼𝘂𝗻𝗱𝗮𝘁𝗶𝗼𝗻 partnered with Gilead Sciences for the powerful campaign. As part of this initiative, we were featured on an episode of Lifetime's "𝘽𝙚𝙝𝙞𝙣𝙙 𝙩𝙝𝙚 𝙈𝙮𝙨𝙩𝙚𝙧𝙮" hosted by Montel Williams. The segment highlighted how collaborative advocacy elevates patient voices and brings this rare condition into the spotlight.

We are incredibly proud that our very own secretary, 𝗝𝗮𝗰𝗸𝗲𝗹𝗶𝗻𝗲, was featured in the episode to share her story!

01/09/2026

🚨U.S. PBC Patients🚨

Be sure to sign up for September's Community Cafe this Thursday, September 3rd! Community Cafe's are a wonderful opportunity to meet other patients living with primary biliary cholangitis in the United States.

Coming up this week at the PBC Foundation - week of Monday 31 August.

Whether you're looking for information, support, or the chance to connect with others affected by PBC, we'd love to see you.

Visit our website for more information and details on how to book:
https://www.pbcfoundation.org.uk/events/

01/09/2026

We are so thankful to have had the opportunity to work with these amazing advocacy groups and bring light to primary biliary cholangitis. 💜

As PBC month starts and with International PBC Day approaching, we are looking forward to sharing an international PBC awareness project with you all soon 💜.

Keep an eye on our social media platforms in the coming days for something special.

01/09/2026

It's Day One of International PBC Month and we are so excited to share Danielle's poem featured in the Gilead Sciences campaign in collaboration with the PBC Foundation. Danielle is the President of Friends of the PBC Foundation. The poetry campaign debuted at EASL 2026. Being a Respiratory Therapist during the brunt of the Covid-19 pandemic and navigating her diagnosis of primary biliary cholangitis forever changed Danielle. Thank you to Gilead for sharing her story! 💜

27/08/2026

Our friend Livie Wells recently featured Jackeline, Secretary of Friends of the PBC Foundation, on her podcast, "Living My Best Liver Life with Livie Wells". Jackie shares what it’s like to live with PBC while balancing life as a mom and wife. The road to a PBC diagnosis isn’t always easy, and Jackie’s perseverance in the face of fatigue and other health challenges is a powerful reminder of just how strong we can be.

You can listen to Jackie's episode on Spotify here :
https://open.spotify.com/episode/7uc7ndKhTY23xv9yEFhNQ3?si=QgrXxHusQFuAipVxxf_q4w&utm_source=copy-link&t=0&pi=C9d-67VaSS21v

You can find more information about Livie and her podcast here :

https://livingmybestliverlifewithliviewells.com/

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."