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Hi there! My name is Emily Ventura, I am mom to Cedar age 10 with PFIC 2. I live in the United States, but work with parent/patient leaders all over the world to help advocate the needs of the PFIC community. The International Alliance is a unique council that is dedicated to addressing resource needs, drug access, starting affiliate programs and navigating and building relationships with clinicians, researchers and industry within the unique contexts of different countries. It provides a global identify to organizations and the global PFIC community, and is a coordinated effort to work together to find solutions. I work closely with co-leader Francesca Lombardozzi, with PFIC Italia Network, to help solve problems and build leadership in any area of the world.
This council meets quarterly, the next meeting is on Saturday, July 9. Interpreters are offered for these meetings so that all members can share without the barrier of language. Sign up in advance to join this wonderful council!
Feel free to ask any questions in this group, send me (emily@pfic.org) or Francesca (pficitalia@hotmail.com) an email or simply follow along to stay updated! Also, feel free to email one of us if you would like to see the notes and powerpoint from the first meeting. If I can figure out how to attach it to the forum I will:)
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