The ARPKD/CHF Alliance is privileged to serve the ARPKD/CHF patient community since 2001. We are a 501(c)(3) nonprofit, public charity and the only organization in the world 100% dedicated to both Autosomal Recessive Polycystic Kidney Disease (ARPKD) and Congenital Hepatic Fibrosis (CHF).
Much has happened since our startup and the outlook for those affected has changed considerably. In 2001, disease specific research was nonexistent except for one pilot study (small scale preliminary study). Almost universally ARPKD was considered a hopeless condition and more often than not parents were given antiquated, obsolete information with little to no hope for survival. With thriving children affected by both kidney and liver disease, our deepest assumptions told us more could be done. With passion and hard work we created a tipping point for ARPKD research and generated genuine interest in CHF for the first time.
From the beginning we have utilized the highest ethical policies and principles, including a Confidentiality and Code of Conduct Agreement and have far exceeded our initial goal, which was simply to generate more interest for both ARPKD and CHF. Patient needs have always guided our direction and our services have always been provided free to the community.
We started with one-on-one support (pre-internet times and families were very isolated), this blossomed into a support group, free newsletters, educational materials, and the development of hundreds of patient questions concerning medical care specific for our disease. We introduced the concept of “ARPKD/CHF Care Centers” for multidisciplinary care and generated the largest research study in the world for our disease for better understanding; this resulted in a prolific number of professional papers. Additionally, we created a Research Grant Program, Professional Education, a Youth Ambassador Project, and represent ARPKD/CHF at professional meetings and support legislation that benefits the patient population.
Essentially, the ARPKD/CHF Alliance created impact and developed substantial contributions. We continue to make a difference everyday with patient-centered, patient-oriented goals.