2 Responses

  1. Anonymous July 12, 2010 at 5:26 pm |

    [...] This post was mentioned on Twitter by Ellen Seidman, Janis, Anne Barbano and others. Anne Barbano said: @sneakpeekatme just read your blog for @CRDNetwork (Children's Rare Disease Network) http://bit.ly/af3L3q #rare <-Excellent commentary [...]

  2. Anonymous July 12, 2010 at 5:59 pm | | Reply

    To solve rare disease we must sacrifice our privacy. Patient activism and grass roots efforts are fueled by transparency.
    Seth Wohlberg
    http://www.rechildrens.org

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