Get Involved

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

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.

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.

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!

Organize a Fundraiser

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

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. 

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.

Celebrate PFIC Awareness Day

October 5th is the big day! Every year, our global community comes together to raise awareness for PFIC related disorders. Join the cause!

Attend a PFIC Family & Scientific Conference

We aim to bring together patients & families, clinicians, researchers and industry to share scientific knowledge, share patient experiences and identify ways we can collectively improve the lives of patients and families affected by PFIC.

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!

Start a PFIC Network Global Affiliate

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