Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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HELP US SHOW THE FEDERAL GOVERNMENT THAT WE SUPPORT RESEARCH!

Discussion in 'Active Clinical Studies' started by *GG*, May 18, 2011.

  1. *GG*

    *GG* Senior Member

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    Concord, NH
    Enroll today in the Rare Disease Clinical Research Network (RDCRN).

    The North American Mitochondrial Disease Consortium (NAMDC) needs your help. You may be aware that NAMDC is developing a clinical database that will provide you with a certified NAMDC diagnosis.

    When you participate, you can expect to get a call within 4 - 6 weeks from a NAMDC researcher about this database. NAMDC is a member of the federal-government sponsored Rare Disease Clinical Research Network (RDCRN). Its funding will be determined partly based on the number of patients entered in the RDCRN database by the end of this month. To register follow these instructions:

    Click on the link below

    - Select the appropriate mitochondrial disease. If you do not see your specific mitochondrial disease listed on the site, you should select Encephalomyopathy.

    - At the bottom of the web page, click the button that says "Join."

    You will be directed to an authorization agreement which you should read. If you click "I Agree," the registry form will appear. You will enter your basic contact information and some information about your diagnosis.

    Click here to be taken to the site where you can provide your information.

    http://rarediseasesnetwork.epi.usf.edu/NAMDC/register/registry.htm
     
  2. *GG*

    *GG* Senior Member

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    Concord, NH
    I signed up for this, I used this as my diagnosis:Mitochondrial Encephalomyopathy

    Although I did say I was self diagnosed, it's an option you can check.

    GG
     

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