ACS presentation 11th Aug San Francisco on the need for open data in ultra rare and rare diseases. Describes efforts of parent/ patient advocates to fund drug discovery research. Also it describes software for open collaboration and what needs to be done to create software champions for rare diseases. Mentions diseases like Sanfilippo Syndrome, giant axonal neuropathy and Charcot Marie Tooth. Apps like ODDT are also mentioned as a means to share data.