PKD Foundation - There is a plethora of information on this site. I don't even know where to start but I would suggest everyone contact their local PKD chapter coordinator as well as the ARPKD chapter.
ARPKD/CHF Alliance - This site is dedicated just to ARPKD and CHF. I found the patient stories really inspiring. (you can find them under the patient information tab then patient stories)
ARPKD Facebook Group
ARPKD/CHF Facebook Group
ARPKD Angels Facebook Group
Blog Roll
Here's the list of blogs I frequent that deal with ARPKD.
Kidney's and Eyes - Julia Robert's inspiring Blog. Julia is one of the ARPKD chapter coordinators.
Three Peas Blog - Michele Karl's Blog. Michele is one of the ARPKD chapter coordinators.
Living life with the Terians - A heart felt blog by the Terians about life without their precious son Jody.
