Sally James posted an update 4 years, 9 months ago
Got to report back from a wonderful documentary, RARE, that I saw as part of Science Festival. Panel included patient from the film, who has a terminal disease, and was randomized to NOT receive the drug being studied in a trial, and is at peace with that. But social media – and networking – are a huge part of the documentary. A single woman’s crusade to find other patients helped NIH launch research. Wow. Movie has not been widely distributed yet.
Movie got some funding from Stanford Bioethics program.
Nice, thanks for the report. Saw via you, too that we can catch it on KCTS sometime in August. They have a nice video site, so maybe it will end up online? I wish it was embedded in a site built for discussion, or if YouTubed it would be embed-able in existing online patient communities, more share-able in social media, etc.