Rare Disease Communities (http://www.rarediseasecommunities.org/en/community/alkaptonuria-aku) is an online social network for patients & families to connect with one and other to support and share vital experiences on aspects of living with a rare disease. Organized into disease specific communities, the platform will also provide links to quality information and involve patient associations in the governance and growth of each community. The project is a joint collaboration between EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders).
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.