The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Pepsi Refresh Everything for National Organization for Rare Disorders (NORD)

Discussion in 'Action Alerts and Advocacy' started by *GG*, Jan 3, 2011.

  1. *GG*

    *GG* Senior Member

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    Empower the 1 in 10 Americans with rare diseases through knowledge

    NORD will update and expand the Rare Disease Database, a unique online resource that provides reports in patient-friendly language on more than 1,200 rare diseases. A rare disease affects fewer than 200,000 people, and together they affect nearly 30 million Americans. Many rare diseases are obscure and extremely difficult to diagnose, and the patients suffering from them often feel terribly isolated and are desperate for any information.

    These reports provide information on symptoms, causes, treatments, clinical trials, and links to other sources of help, like patient support groups and other health organizations.

    Educational tools and resources about specific rare diseases are a powerful way to empower patients to become self advocates.

    NORD strives to add new reports and update the current ones with the most up-to- date information; however, with meager resources this is often difficult. The reports are written by medical writers and are reviewed at no cost by medical experts.
    How will the 50K be Used?
    $ 30,000 Salary for 2 Medical Writers
    $ 5,000 Salary for Editorial Assistant
    $ 10,000 Salary for Medical Editor
    $ 5,000 IT Support


    http://www.refresheverything.com/nord
     
  2. *GG*

    *GG* Senior Member

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    I know this will not likely help ME/CFS people, but perhaps some of these people have XMRV?

    I think it helps to pay it forward, and help others who are in a very similar situation as us!

    GG
     
  3. glenp

    glenp "and this too shall pass"

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    I voted

    I dont know if it went through though as there was no confirmation
     
  4. frenchtulip

    frenchtulip Senior Member

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    I have been casting ten votes daily every month for Health projects--esp. for the medical research projects, where the dollars can have a great impact. There are many devastating illnesses which do not get adequate government funding.

    I will add NORD to my list, and there are a lot of really good Health projects this month. My goal is always to get funding for as many Health projects as possible. If, by the second or third week, a project does not stand a chance of winning or being a runner-up to compete in the next round, I switch my vote to support another Health project which does have a chance of doing well.

    The American Express Members project Take Part contest is another competition in which I am voting weekly for a Health organization. The State Farm Batting competition was a really fun approach, and several of my favorite Health organizations won nice amounts. These are great opportunities! I make voting a priority.
     
  5. *GG*

    *GG* Senior Member

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    Anybody else on board? Wish we had something more specific for our cause, then we could ask for votes for our Cause!
     
  6. *GG*

    *GG* Senior Member

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    Testing, testing, testing.
     

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