ScienceOnlineSeattle

ScienceOnlineSeattle

  • Sally James posted an update 5 years, 2 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.

    http://medethicsfilms.stanford.edu/films/rare.html


    • 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.