Nat'l Org for Rare Disorders in the running for gov. attention/funding...

Discussion in 'Your Living Room' started by wileyriley, Mar 9, 2010.

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  1. wileyriley

    wileyriley New Member

    Go to the link below and give them your vote. You have to register with an e-mail account before you can vote. Right now, "rare diseases" is in 6th place, let's keep it there or move it higher! You can vote everyday between now and March 12th.

    "The 10 most popular ideas will be presented to relevant members of the Obama Administration, and will subsequently mobilize its full community to support a series of grassroots campaigns to help turn each idea into reality."

    It's worth a shot. Any attention we can get for ourselves and any sufferer of a rare disease is worthwhile. The following is a good quote that one of the commenters on the site above posted:

    Rare disease and neglected diseases need:
    * Novel partnerships grounded in resource-sharing that shares success and results without regard for turf, decisions made on the basis of the whole, not on advancing one disease, one technology, one entity or another; permeable boundaries
    * Open access to methods and data, both positive and negative
    * New knowledge, both process and content, will be evaluated regularly to iteratively retool the effort, this will be flexible and responsive
    By implementing novel solutions throughout the research and healthcare system, we can transform the current ?pipeline? into an integrated, multi-tasking network. Give rare and neglected diseases the attention they deserve as model systems for all diseases, and we will all benefit.

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