Get Involved

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PFIC Awareness Day

Help us improve the lives of patients and families living with PFIC and PFIC related diseases.

Quick Opportunities:

Join the Patient RegistryShare Your StoryOrganize a FundraiserShare Your Treatment Experiences

Consistent Engagement:

Become a Peer MentorVolunteer on a CommitteeJoin the International AllianceStart a Global AffiliateServe on our Board of DirectorsParticipate in Project IMPACT

Join the PFIC Patient Registry

Everyone’s participation is important. By participating in the self-report registry, you help speed up PFIC research, and make research more meaningful for patients.

Learn More & Enroll

Share Your Story

Your voice is your superpower.
Patient stories play an important role in many ways. By sharing your story, you can help patients and caregivers feel less alone, raise disease awareness, influence legislation, and even affect the way scientific research is conducted.

Share Here

Serve on the Board of Directors

Interested in guiding the future of PFIC Network? Want to leverage your personal and professional skills to further our mission? Apply to join our Board of Directors!

Learn More

Organize a Fundraiser

Raise money for PFIC research and community support programs by hosting your own fundraiser or participating in PFIC Awareness Day!

Start Fundraising Today

Become a Peer Mentor

Your journey with PFIC is a source of wisdom and hope. By becoming a Peer Mentor, you can help empower other patients, families and caregivers to feel ready to tackle the challenges of living with PFIC and related diseases

Connect with a Peer

Volunteer on a Committee

Meet other PFIC families, share your unique perspective and help guide PFIC Network’s advocacy and scientific initiatives by joining one of our community-led advisory bodies: the Community Advisory Council or the IRRRC. 

Find Out More

Join the International Alliance

United, we are an unstoppable force. Work together with PFIC patients around the globe to find country-specific solutions for resource needs, patient support, policy issues, and research.

Learn More

Start a PFIC Network Global Affiliate

Help organize and connect PFIC patients with resources in your country by starting an affiliate organization.

Take Action

Share Your Treatment Experiences

Our Treatment Experience App (TEA) is an interactive resource where you can learn about PFIC treatments and share your own experiences through a built-in survey. Every two weeks, we summarize these experiences and update the app. Help to make the TEA better by sharing your experiences!

Check it out

Participate in Project IMPACT

IMPACT stands for: “Identifying research targets by Merging Patient And Clinician Treatment information.” The goal of this 2 year project is to prepare the PFIC community for patient-centered outcomes research by July 2025. 

Learn More

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The Disease

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