The PFIC Network 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.
Any person from any country who is passionate about advocacy for PFIC and related diseases can become an Alliance member. Members engage in a coordinated effort to find solutions together.
Objectives of the International Alliance include:
- Meeting consistently to discuss the needs of the international PFIC community.
- Working together to ensure shared access to PFIC educational resources and scientific developments by keeping materials universally accessible, medically accurate, translated, and up-to-date.
- Creating and instituting a Global Assistance Fund to provide financial assistance to PFIC families in need.
- Avoiding duplicative work by maintaining consistent communication and collaboration.
- Collectively engaging new and creative ways to increase global awareness, improve patient support, and advance research initiatives.
- Encouraging the development of new PFIC Global Affiliates in countries not currently represented.
- Staying informed and working together on advocacy and policy issues – because a legislative decision in one country can create ripple effects that are felt in every other country.
Live interpreter services are available. Please contact firstname.lastname@example.org if you would like to request an interpreter for an International Alliance call.
The International Alliance meets quarterly via Zoom. Two meetings are held on the respective meeting date to accommodate the various time zones of participants.
Click one of the links below to register for the next International Alliance call:
International Alliance Leadership:
PFIC Network Global Affiliates and Their Stories
There is power in connection. Watch these three videos of our global advocates sharing their stories to show the power of connection and the International Alliance. Bernadetta and Francesca’s videos are in their native language but have interpreters on the line.