The PFIC Family Conference was the first ever opportunity for PFIC families worldwide to get together at one event. Thank you to all who traveled to attend, the weekend was extremely special!
This conference was made possible by the extreme generosity of the Allagille’s Syndrome Alliance who allowed us to join in their weekend. Also, a very special thank you to our Presenting Sponsor, Albireo Pharma and our supporting sponsor, Mirum Pharmaceuticals. Their support enabled 22 families struggling with PFIC to join together in one place.
Inspired by our children and brought to life by our board members, this day is dedicated to igniting a fire in our community and bringing awareness to the debilitating itch that PFIC has on our children, our families and our lives.
On October 5, 2019 the PFIC Advocacy and Resource Network inspired the first annual PFIC Awareness Day. On this day, members of our community hosted individual fundraisers and awareness efforts in their own personal communities. In collaboration with Life Gave Lemons, the PFIC Network provided toolkits to the first 25 members of our community who expressed interest in hosting a fundraiser. Toolkits included stickers, bracelets, pens and information on how to create your own personal awareness day. Those who did not host fundraisers still were involved in spreading awareness on social media by introducing themselves and their PFIC story with the #pficawareness and #stoptheitch. We look forward to building on this day next year as we plan for the second PFIC Awareness Day!