Did You Know?
In 2001, when the ARPKD/CHF Alliance was established, resources and research were at a bare minimum. Education consisted of a pamphlet, (with one paragraph on Congenital Hepatic Fibrosis), there was one pilot study (a small-scale experiment) for ARPKD, and no research interest in Congenital Hepatic Fibrosis.
Our gene was not yet discovered and families were desperate for help. Parent advocates sensed the need and created and mailed hundreds of free newsletters and provided one-on-one support, which often meant hours on the phone as the internet was not yet well established. Foundering board members felt strongly CHF was part of the disease process and should be included, thus ARPKD/CHF followed the newsletter title to establish the significance of Congenital Hepatic Fibrosis.
The ARPKD/CHF Alliance has had a profound effect on research, education, and advocacy, creating many firsts that other organizations have followed, as we continually strive to improve the lives and address the needs of those affected, prenatally to post-transplantation. Our mission has been steadfast from day one: to educate, advocate, support, and advance research specific to Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis.