International MPN News, Science & Opinion

 

forumsphere

We know you’re busy, specially with the weekend just hours away.  So let me make it short. Two items:

(1)

We sent an MPNforum report to Friends of the Forum, a support group, a few days ago.  We were asked to publish it since most of the items could be of interest to others in the MPN community.  So we put up a page you can get to here if you’d like a brief update on  The Fatigue Project – MPNclinic new members – New Board of Editors – The Index Project – Why the Zebra Coalition – MPNforum operations – New publication date.

(2)

finger pointing small More than 350 MPN patients, doctors, and caregivers have signedZebra and Zebrette The Zebra Coalition’s Patient Advocate petition to the FDA Commissioner. We plan to print and deliver the petition to the Commissioner within a week, so if you have not yet signed and wish to participate please do it now. You can get to the Petition here. Thank you!
  …Now let’s wrap things up for the weekend,  Enjoy!
                 Zhen
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  ZH sml (in honor of the Sochi Winter Olympics)

Comments on: "" (2)

  1. diesch2012 said:

    Zhen, I signed this petition, however, I had no IDEA that I was going to be made part of MOVEON.ORG! I thought I was signing a regular bill. I think this needs to be Disclosed..

    Thanks

    Jean

    • Hi, Jean… Thanks for the heads up. You’re right to be concerned. I don’t like the idea that signing a petition would obligate any of us to be part of anything to which we didn’t agree. If in fact we’re being subscribed to MoveOn in error, it’s easy enough to unsubscribe. Here is the privacy policy That page includes an Unsubscribe link. I also found the Unsubscribe link on e-mails I’ve received from MoveOn.
      We set up the petition with MoveOn.org Civic Action which is a nonprofit education and advocacy group separate from MoveOn Political Action, which is a registered PAC. Please let me know if you have any trouble Unsubscribing. And thanks again for the alert.

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