2024 PFIC Family & Scientific Conference
2024-04-26 - 2024-04-27 | Cincinnati, Ohio, Cincinnati, Ohio, USA
The PFIC Family & Scientific Conference is back! This unique conference brings together PFIC patients, families, clinicians, researchers, and industry stakeholders for an unforgettable experience of learning, sharing, and networking.

We are partnering with Cincinnati Children’s Hospital and Medical Center to host the 2024 conference in Cincinnati, Ohio. The Undiagnosed and Rare Liver Disease Center at CCHMC is focused on improving outcomes and finding a cure for PFIC and related diseases. We are excited to work together to make this conference a special one!
We hope you can join us!

Project IMPACT June Focus Group Meeting
2024-06-20 18:00 - 19:30 (America/New_York) | IL
Register for the June Focus Group now!
Join our community of patients, parents, clinicians, and researchers on June 20th on Zoom for a conversation about research!
Why?
We will be brainstorming how a specific type of research called Comparative Effectiveness Research (CER) could help address important questions like, “Which treatment is the best choice for me/my child?”. CER could also create more consistent approaches in how doctors care for PFIC, reducing the variability in treatment plans that patients experience across different centers.
We’d love to have you and to hear your valuable perspective. Join us from your desk, couch, park, or wherever you are. We look forward to seeing you there! ❤️
You do not need to have attended a previous focus group to join this one! Project IMPACT is our ongoing patient-centered outcomes research education project. Check out the IMPACT project webpage for more info on the project. Interested in getting involved and getting up to speed? Click the “Participate” button on the webpage to take Modules 1 ,2, & 3 today!
This project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455).

International Alliance Meeting #1 (July 2024)
2024-07-08 06:00 - 07:00 (America/New_York) | IL
Join us July 8th for a meeting of the PFIC Network International Alliance!
The International Alliance seeks to provide an international identity for PFIC organizations and the global PFIC community as a whole. It is a space dedicated to addressing resource needs, as well as advocacy and policy issues specific to each participating country.
All PFIC patients, family members and advocates are welcome!
At this meeting, we will give updates on current global advocacy efforts and discuss plans for this year’s PFIC Awareness Day in October.
We hope you can join us!
To accommodate more time zones, we are offering two meeting times: 6:00 AM and 3:00 PM EST.
Register for the 6 AM EST meeting
Register for the 3 PM EST meeting

International Alliance Meeting #2 (July 2024)
2024-07-08 15:00 - 16:00 (America/New_York) | IL

Northeast Ohio Liver Alliance Roundtable Webinar
2024-07-11 18:00 - 19:00 UTC | IL
Our Executive Director, Emily Ventura, will be a panelist at an upcoming free webinar focusing on PFIC and Wilson’s Disease hosted by the Northeast Ohio Liver Alliance. Webinar participants will have the chance to learn from two of the nation’s foremost expert physicians in these two highly rare liver diseases. Hear a conversation between providers and panelists about patient-centered care!
Register Today!

Project IMPACT August Focus Group Meeting
2024-08-20 18:00 - 19:30 (America/New_York) | IL
Register for the August Focus Group now!
Join our community of patients, parents, clinicians, and researchers on August 20th on Zoom for a conversation about research!
Why?
We will be brainstorming how a specific type of research called Comparative Effectiveness Research (CER) could help address important questions like, “Which treatment is the best choice for me/my child?”. CER could also create more consistent approaches in how doctors care for PFIC, reducing the variability in treatment plans that patients experience across different centers.
We’d love to have you and to hear your valuable perspective. Join us from your desk, couch, park, or wherever you are. We look forward to seeing you there! ❤️
You do not need to have attended a previous focus group to join this one! Project IMPACT is our ongoing patient-centered outcomes research education project. Check out the IMPACT project webpage for more info on the project. Interested in getting involved and getting up to speed? Click the “Participate” button on the webpage to take Modules 1 ,2, & 3 today!
This project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455).

2024 PFIC Labor Day Party and Disc Golf Tournament
2024-09-02 | IL
Join us Monday, September 2nd (Labor Day) for the official kickoff event of our PFIC Awareness Day fundraising campaign!
This family-friendly event will have disc golf, corn hole and more!
Hosted by Redpoint BBQ in Campton, KY in the beautiful Red River Gorge area.
Check out our event website for more info!

PFIC Awareness Month
2024-10-01 00:00 - 2024-10-31 23:30 UTC | IL
PFIC Awareness Day is October 5th, but we know this disease deserves more than a day. So here at PFIC Network, the entire month of October will be PFIC Awareness Month. All month long we will be raising awareness about PFIC and raising funds for PFIC research and the support services you have come to love.

2024 PFIC Awareness Day
2024-10-05 | IL
Every year on October 5th, we recognize, share, and support the PFIC community in hopes for a better future for those we love.
Visit our PFIC Awareness Day page to learn more about how you can get involved!

Kids Club- Official Relaunch Zoom Call
2024-10-09 19:00 - 20:00 UTC | IL
We are so excited to announce the official launch of the PFIC Network’s Kids Club, a gathering space for teens and tweens living with PFIC.

What is Kids Club?
Kids Club is a virtual gathering of teens and tweens that will take place via WhatsApp and Zoom. WhatsApp is a free messaging app that allows participants to share text-based messages, pictures, and emojis within a group. The Kids Club WhatsApp group will be a closed group, meaning that participants must be added by a group admin. This helps protect kids from spammers, scammers, and other unsavory types. If you would like to take further steps to protect your child’s privacy on WhatsApp, you can learn about parental controls here. Lisa Crompton (PFIC Network Program Associate, as well as a PFIC parent) and Lisa Jensen (Support Group Facilitator) will be group admins, along with teen volunteer extraordinaire, Cadence Crompton. There are no hard and fast age rules for WhatsApp, so if you feel that your child is mature enough to benefit from participating in casual group conversations with other kids with PFIC, then we hope to see them there!
Beginning in October, Kids Club will also host monthly Zoom calls for teens and older tweens (suggested age 11+). Lisa Jensen will facilitate these calls, with the aim of handing more and more leadership and autonomy to the kids over time. Calls will include games, icebreakers, casual conversation, and–depending on the interests of participants–opportunities for advocacy and outreach. The first call is scheduled for Wednesday, October 9, 7:00-8:00 PM EDT.
Register Today!

PFIC IMPACT October Focus Group Meeting
2024-10-22 18:00 - 19:30 UTC | IL
Join us for our next Focus Group in October!

Join our community of patients, parents, clinicians, and researchers on Tuesday, October 22nd at 6pm EST on Zoom for a conversation about PFIC research priorities! You do not need to have attended a previous IMPACT Focus Group to join us. For more information about Project IMPACT, please visit our project website.
Register Now!

PFIC Kids Club Meeting-November 2024
2024-11-02 19:00 - 20:00 UTC | IL
Are you a teen or tween with PFIC or BRIC? Join us on November 2nd for our next Kids Club call!
Register today!
What is Kids Club?
Kids Club is a virtual gathering of teens and tweens that will take place via WhatsApp and Zoom. WhatsApp is a free messaging app that allows participants to share text-based messages, pictures, and emojis within a group. The Kids Club WhatsApp group will be a closed group, meaning that participants must be added by a group admin. This helps protect kids from spammers, scammers, and other unsavory types. If you would like to take further steps to protect your child’s privacy on WhatsApp, you can learn about parental controls here. Lisa Crompton (PFIC Network Program Associate, as well as a PFIC parent) and Lisa Jensen (Support Group Facilitator) will be group admins, along with teen volunteer extraordinaire, Cadence Crompton. There are no hard and fast age rules for WhatsApp, so if you feel that your child is mature enough to benefit from participating in casual group conversations with other kids with PFIC, then we hope to see them there!
Beginning in October, Kids Club will also host monthly Zoom calls for teens and older tweens (suggested age 11+). Lisa Jensen will facilitate these calls, with the aim of handing more and more leadership and autonomy to the kids over time. Calls will include games, icebreakers, casual conversation, and–depending on the interests of participants–opportunities for advocacy and outreach.
If you have questions, or would like to be added to the Whatsapp group, please contact us!

December IMPACT Focus Group
2024-12-18 18:00 - 19:30 UTC | IL
Join us for our next Focus Group in December!

Join our community of patients, parents, clinicians, and researchers on Wednesday, December 18th at 6pm EST on Zoom for a conversation about PFIC research priorities! You do not need to have attended a previous IMPACT Focus Group to join us. For more information about Project IMPACT, please visit our project website.
Register Now!

February IMPACT Focus Group
2025-02-20 18:00 - 19:30 UTC | IL
Join us for our next Focus Group in February!

Join our community of patients, parents, clinicians, and researchers on Thursday, February 20th at 6pm EST on Zoom for a conversation about PFIC research priorities! You do not need to have attended a previous IMPACT Focus Group to join us. For more information about Project IMPACT, please visit our project website.
Register Now!

Rare Disease Day
2025-02-28 00:00 - 23:30 UTC | IL
Rare Disease Day is the global movement for rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year. It was created in 2008 by EURORDIS and over 60 national alliance patient organisation partners.

April IMPACT Focus Group
2025-04-22 18:00 - 19:30 UTC | IL
Join us for our next Focus Group in April!

Join our community of patients, parents, clinicians, and researchers on Tuesday, April 22nd at 6pm EST on Zoom for our final IMPACT Focus Group! You do not need to have attended a previous IMPACT Focus Group to join us. For more information about Project IMPACT, please visit our project website.
Register Now!

PFIC Germany Zoom Meetup
2025-06-08 13:00 - 14:00 (America/New_York) | IL
We would like to share a special invitation from Nikolina in Germany, a member of the International Alliance:
?PFIC Germany is calling! Are you a PFIC patient or a caregiver living in Germany? We would love to get in touch with you! We are organizing a Zoom meeting for PFIC families in Germany to share stories, support each other, and build a strong local community.
Our first meeting on June 8 at 7 pm CEST (UTC+2) will be focused on getting to know each other.
If you’re interested, please send an email to Nikolina: pfic.deutschland@gmail.com
Let’s come together and support each other. You are not alone!

✨️ Ankündigung! ✨️
Wir haben ein Datum für unser erstes Online-Meeting: Am 8. Juni um 19 Uhr! ?
Es wird ein entspannter Austausch mit PFIC Familien.
Wenn noch jemand Interesse hat, meldet euch gerne bei uns – ihr erhaltet dann demnächst den Zugangslink.
Wir freuen uns auf einen schönen gemeinsamen Abend!

2025 Cholestatic Liver Disease Summit
2025-06-26 - 2025-06-28 | IL
The 2025 PFIC Family & Scientific Conference will be part of the Inaugural Cholestatic Liver Disease Summit! In partnership with Alagille Syndrome Alliance (ALGSA) and Biliary Atresia Research & Education (BARE), we will be gathering the wider cholestatic liver disease community together in one place. This unique event will foster collaboration and learning between patients and families, researchers, clinicians and industry stakeholders. We hope you can join us!
Stay tuned for more event details!

PFIC International Alliance Meeting 2025 (Session 1)
2025-07-05 06:00 - 07:30 UTC | IL
PFIC International Alliance Annual Virtual Meeting
Saturday, July 5, 2025
Join us for a global forum of collaboration, strategy, and community as the PFIC International Alliance brings together organizations and advocates from around the world.
Two different session times are offered to accomodate as many time zones as possible: 6 AM EST and 3 PM EST.

Why Attend?
This annual meeting is your opportunity to:

Align on advocacy and policy strategies

Share and access medically accurate, translated educational resources

Brainstorm creative ways to boost awareness, support patients, and advance research

Agenda Highlights:

Leadership & Drug Access Updates

Global PFIC Priorities & Activities

Awareness Day Messaging & Involvement

Open Discussion: Needs, Stories & Ideas

Together, we grow stronger.
Let’s connect, collaborate, and take action for the global PFIC community.
? Register now:
Registration Link Saturday, July 5, 0600(US/EST), 1100 (UK), 1200 (Rome, Malta), https://us06web.zoom.us/meeting/register/CtnW4E3HRsWlN9WW9wPYuw
Registration Link Saturday, July 5, 1500 (US/EST), 2000 (UK), 2100 (Rome, Malta)
https://us06web.zoom.us/meeting/register/0YkLZAAIRCGyoPYNiYEN9g

PFIC International Alliance Meeting 2025 (Session 2)
2025-07-05 15:00 - 16:30 UTC | IL
PFIC International Alliance Annual Virtual Meeting
Saturday, July 5, 2025
Join us for a global forum of collaboration, strategy, and community as the PFIC International Alliance brings together organizations and advocates from around the world.
Two different session times are offered to accomodate as many time zones as possible: 6 AM EST and 3 PM EST.

Why Attend?
This annual meeting is your opportunity to:

Align on advocacy and policy strategies

Share and access medically accurate, translated educational resources

Brainstorm creative ways to boost awareness, support patients, and advance research

Agenda Highlights:

Leadership & Drug Access Updates

Global PFIC Priorities & Activities

Awareness Day Messaging & Involvement

Open Discussion: Needs, Stories & Ideas

Together, we grow stronger.
Let’s connect, collaborate, and take action for the global PFIC community.
? Register now:
Session 1 Registration Link Saturday, July 5, 0600(US/EST), 1100 (UK), 1200 (Rome, Malta), https://us06web.zoom.us/meeting/register/CtnW4E3HRsWlN9WW9wPYuw
Session 2 Registration Link Saturday, July 5, 1500 (US/EST), 2000 (UK), 2100 (Rome, Malta)
https://us06web.zoom.us/meeting/register/0YkLZAAIRCGyoPYNiYEN9g

3rd Annual PFIC Charity Party + Disc Golf Tournament
2025-09-01 | Redpoint BBQ, 356 Smith Rd, Campton, Kentucky, 41301
SAVE THE DATE! September 1, 2025
The last two years have been so much fun that we are back again for our 3rd Annual Charity Party + Disc Golf Tournament at Redpoint BBQ in the beautiful Red River Gorge of Kentucky. Join us on Monday September 1, 2025 (Labor Day) for a day of disc golf, cornhole, family fun and more!
Visit our event website to find out more or to register!
Interested in sponsoring this awesome community event? Please contact us!

The National Liver Gathering 2025
2025-09-25 - 2025-09-27 | IL
We will be attending The National Liver Gathering in Pittsburgh, PA. We hope to see you there!

7th Annual PFIC Awareness Day
2025-10-05 | IL
Every year we recognize, share, and support the PFIC community in hopes for a better future for those we love. We use this day to raise awareness and funds to support the PFIC Network mission! To find out more, please visit our PFIC Awareness Day website.

ClimbTime Oakley Halloween Party
2025-10-23 17:00 - 20:00 UTC | Cincinnati, Ohio, Cincinnati, Ohio, USA
The PFIC Network team will be fundraising at Climb Time Oakley in Cincinnati!
🎃 HALLOWEEN PARTY + SHOE DEMO + FUNDRAISER NIGHT! 👻
Oct 23 | 5–8 PM | Climb Time Oakley Cincinnati, Ohio
Join us for a spooktacular evening of climbing, costumes, and community fun! 🧗‍♀️✨
👟 So iLL Climbing Shoe Demo — Try out the latest climbing shoes and level up your send game. 20% off during Demo day!
🎭 Costume Contest — Prize for the most creative and creepy!
🎃 Treats + Tunes + Good Vibes
💪 PFIC Fundraiser — 🩵 PFIC is a rare genetic liver condition with no known cure—early diagnosis, awareness, and treatment can help manage symptoms and improve quality of life.
🧗 RRGCC Membership Drive — Join the movement to protect and expand our climbing community!
Bring your friends, dress up, climb hard, and support great causes! 💜

The Liver Meeting 2025
2025-11-07 - 2025-11-10 | IL
Come see us at our booth at The Liver Meeting 2025 in Washington DC! The Liver Meeting is the annual meeting of the American Association for the Study of Liver Diseases (AASLD) and is one of the largest hepatology conferences in the country. We are honored to represent the PFIC community at this event.

2026 PFIC Family & Scientific Conference
2026-07-09 - 2026-07-10 | Chicago, Illinois, Chicago, IL, United States
2026 PFIC Family & Scientific Conference
July 9-10, 2026 | Chicago, IL
Join the PFIC community for connection, learning, and collaboration in Chicago. This gathering brings together patients, families, clinicians, and researchers from around the world. Learn more by visiting our event website or register today!

8th Annual PFIC Awareness Day
2026-10-05 | IL
