An International PFIC Alliance: One world, one mission.

We are #StrongerTogether!

Progressive Familial Intrahepatic Cholestasis (PFIC), compared to something like diabetes, is very rare and not very well understood. Affecting between 1-in-50,000 and 1-in-100,000 people, PFIC cases can and do occur all around the world. However, not every country has the same infrastructure or advocacy groups. One family’s experience here is not at all the same as another’s way, way over there.  

We formed the PFIC International Alliance to raise awareness worldwide and improve the equity of care. We share resources and work to develop new and creative ways to increase global awareness, advocate for patients and families, and advance global research. 

What is the International Alliance?

The International Alliance is an informal group of organizations and volunteers with a shared interest in PFIC and related diseases. This group seeks to provide a unified identity for PFIC organizations and the global PFIC community as a whole.

The International Alliance traces its roots back to an international community that initially connected on Facebook. As the network grew, separate leaders began focusing on regional and country-specific needs, forming organizations like PFIC Italia and PFIC & Related Disorders Australia, and regional groups such as PFIC Polska and PFIC Canada, but we quickly realized the work we do together relies on collective bandwidth, regardless of what we’re doing independently. The PFIC International Alliance formed as a cooperative structure to ensure the resources we create can scale outward and positively affect any patient and any family diagnosed with PFIC anywhere in the world.

“When the international PFIC community comes together, what was once isolated becomes a powerful global network—because our numbers, our expertise, and our impact are meant for patients and families anywhere in the world.”

Emily Ventura, Executive Director PFIC Network and International Alliance Chairwoman

Who are the International Alliance members? 

To date, fifteen nations across three major regions of the world have participated in the International Alliance, with its programmatic impact extending even further. We look forward to expanding and formalizing our leadership and membership base in the upcoming years.

Key Accomplishments 

Here’s a quick look at where the PFIC International Alliance has had significant impact over the past few years. 

• Established the global PFIC Awareness Day. October 5 worldwide is the date to drive awareness and encourage volunteerism. 
• Participated in the European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) annual meeting by hosting an outreach booth and networking meetings for four consecutive years
• Expanded financial support, care packages, peer support and educational resources to patients and families in over 19 countries. Partnered in research, including grant funding and registry collaboration opportunities.
• Wrote letters of support for access to treatments & care to government and regulatory agencies in six countries.
• Through Project REACH, provided advocacy support for communities in India and Pakistan and maintain ongoing relationships in these regions

Impact of the Alliance

The International Alliance is focused on these top priorities: 

• Advocating for treatment access globally
• Advocating for new treatment development
• Equitable access to support and resources globally

The International Alliance is here for the patients and caregivers in locations that grant access to the latest and greatest PFIC treatments and resources. We are additionally committed to serving those who have access to resources (e.g. transplant centers, specialists) but cannot gain access to novel treatments. We stand in solidarity with patients and families around the world who struggle to gain access to both resources and new treatments.  

“I promised to myself that since something like that has happened to us, I have to use all my energy to help other mothers not feel so alone.”

Francesca Lombardozzi, President PFIC Italia Network and International Alliance Leader

There is power in connection—around the globe. The International Alliance is expanding with new members in new locations. We are glad to work together to ensure shared access to PFIC educational resources and scientific developments by keeping materials universally accessible, medically accurate, translated, and up to date.

Any person from any country who is passionate about advocacy for PFIC and related diseases can become an Alliance member.

Learn more about joining the PFIC International Alliance.