Emily Ventura

The website PFIC.org was founded in 2002 by a mom who wanted to know all she could about her daughter’s disease. She envisioned a place that people could visit when they needed information, hope and understanding. Through her dedication and commitment, she has helped connect families with providers, built accessible genetic testing labs and has stayed up to date with the latest research. In September 2018, three PFIC moms worked to expand pfic.org into PFIC Advocacy and Resource Network, a 501c3 charitable organization. PFIC Network is led by PFIC parents and dedicated supporters. Although we are a US-based organization, we have a strong connection to families all over the world. Together, PFIC families can become a greater voice in the rare disease community, advocating for more medical research, and creating opportunities to help families connect across the world and receive the support they need. Together, we WILL make a difference