In an effort to generate critical mass around an important topic, the Patient Centered Care Working Group is hosting Ed Fennell to speak about using HIT to improve diagnosis and care of rare dieases during the November 27th call.
Ed has been working with Luis Ibanez to hold Rare Disease Hack-a-thons at Rensselaer Polytechnic in Albany: http://www.osehra.org/blog/third-hackathon-rare-diseases-rensselaer-polytechnic-albany-november-16th. Ed is driving the Forum on Rare Diseases at the Albany Medical Center, and has been organizing a network on support of the Rare Diseases communities. Here is a recent talk by Ed Fennell at the Rensselaer Center for Open Source: http://www.youtube.com/watch?v=HdqjCdi6xvk&feature=share&list=PLE-pvxaQrkkp5RnRe6QoJ9zRzRH4CqC8Y, and a recent TEDxAlbany on raising awareness about Rare Diseases.
Please check out what he has been up to using the links in the above paragraphs and join us for conversation and questions.