TonyAtTheNIH (http://tonyatthenih.wordpress.com/) is a blog by Tony Dear chronicling his experience at the National Institutes for Health. A number of tests to add to the AKU knowledge base will be conducted by Dr. Wendy Introne, a pediatrician and biochemical geneticist who performs clinical research on rare genetic conditions at the National Human Genome Research Institute. The hope is that the blog will encourage others with AKU to visit the NIH for the same tests so doctors can hopefully find a cure for AKU.
A Rare Disease Explained (http://www.youtube.com/watch?v=Ok03xvqZ87w) is a YouTube by Denise Higgins. She explains a little about the disease and her experience. Running time is about one minute.