039 - Community, Advocacy, and the PFIC Network with Emily Ventura

In this episode of the It Matters podcast, Walter Perez converses with Emily Ventura, the executive director of the PFIC Network, supporting families affected by Progressive Familial Intrahepatic Cholestasis (PFIC), a rare liver disease. Emily shares her journey from nurse to advocate after her daughter's PFIC diagnosis, emphasizing the importance of community and resources. They discuss the network's growth, advocacy efforts, and the significance of collaboration within the rare disease community. Emily highlights the upcoming PFIC Awareness Day and encourages listeners to connect and support the cause through their website and social media. The episode underscores the power of community and effective leadership.

 

Connect with Emily

 

www.pfic.org

emily@pfic.org

IG: pficnetwork

 

Connect with Walter

www.theleaderco.ca

IG: @theleaderco.inc

Facebook: The Leader Co.