Science & Medicine

We are the network

Dec 2013 front page

Why our network matters…

The first news of the Sanofi clinical trial suspension came from a patient,  one of us.

MPNforum has been in regular contact with Sanofi and is on the FDA alert list.  Zhen GeorgeshotYet it took an MPN patient passing on the news that she had been told to stop taking SAR 302503 to break the story.

Thanks to her, within minutes we were able to alert our international community through all the MPN FB pages, all patient support list managers, the Foundations, and publish a bulletin for MPNforum subscribers.

The imetelstat  story that’s featured in this issue would have been distorted without MPN patients sharing their stories.  We had all the corporate press releases, ASH abstract, the advance notices.  Without the personal stories from patients on the imetelstat trial we would only have had a very partial story served up by those deeply invested in bringing the drug to market.

To track these and other developments  we need to inform each other, share our experiences..  If there’s news in this issue of MPNforum  important to others in your MPN network, please pass it along.  Share your views and spread the news because all of us , together,  are the network. 

In this December issue of MPNforum there’s lots of other good stuff to share. Let’s make those connections that keep us the engaged, supportive community that we are.

finger pointing small   The full issue of the December 2013 MPNforum is here.



Comments on: "We are the network" (2)

  1. We are here to help each other and we certainly do that.

    • Jeremy Smith said:

      well said Bonnie. You should see The Dallas Buyers Excellent movie and the challenges the characters in this movie face are similar in many ways to us.

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