Eighteen years ago while pregnant with my first child, the doctors told me the baby would not, could not survive.  God choose a different fate.  Although Nolan has a chronic, progressive disorder, he lives a very normal lifestyle. 

To this day, up to 30% of those affected by Autosomal Recessive Polycystic Kidney Disease (ARPKD) and Congenital Hepatic Fibrosis (CHF) die at birth or shortly after.  

For years the outlook for those affected was of doom and gloom, no professional was optimistic, and accurate information could rarely be found.  The ARPKD/CHF Alliance has changed outlooks and created a voice for this two organ disease, including generating the largest research study to date at the National Institutes of Health. 

The Alliance represents the patient's best interests in a variety of ways, including lobbying, increased awareness, and education.   We have supported research which identified the fibrosis cell in CHF and the first Medical Symposium which brought together researchers on behalf of ARPKD/CHF.  

Our highest priorities are to generate research that leads to high quality care, better patient outcomes, and evidence based guidelines.  This is what YOUR support will allow us to do.  

Donating here is simple, fast, and secure.  It is an efficient way to support the only organization solely dedicated to ARPKD/CHF, so we can continue making a difference. 

For the love of a child.  For my son Nolan.  For all children and the growing number of adults affected.

Many thanks for your support -- and please forward this to anyone who may be willing to support this very worthy cause!  Be a champion for ARPKD/CHF!

With great appreciation,

Colleen Zak