International MPN News, Science & Opinion

April 15, 2013

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April 15, 2013, Vol. 3 No.7


Our house is a mess. Literally.

Getting ready to move from the Monthly Magazine to a Monthly Newsletter and Quarterly Journal is a commotion.  Lots of meetings, blueprints revised and crates of folders and research papers —  badly in need of sorting —  piled in the halls. 

But no way could MPNforum stay dark during this transition… not when there’s a Fatigue Project report and news of breakthrough drugs and their clinical trials.  So… a Transition Edition, on the way to our June 15 grand opening and the return of the MPNclinic.

The Silent Gene…

Here’s hope and promise in a package we couldn’t at first pronounce. lysine This new magical mystery tour into the miraculous workings of our 3.5 billion year old bodies leads to two clinical trials now actively recruiting.   Can you say Panobinostat

Rolling back MF?  

There’s a pretty solid rumor that Promedior is planning an MF trial using a high-tech version of a protein already cleaning house in our bodies…the drug: PRM-151. The story: Here.

 The Patient Playbook…

Working our way through the medical maze that is the World of MPN, sometimes we need a scorecard and a playbook to review our options.  There’s a highly personal view of the landscape in The Patient Playbook..  And Zhen’s Seven (MPN) Heresies to help reconsider the odds.

The Fatigue Project…

Thanks to Dr. Robyn Emmanuel of the Mayo Clinic, MPNforum project coordinator Mary Cotter and the 913 respondents to the Fatigue Project,  we can lift the curtain on the strategies and meds we take to get some relief. (Have a peek.)

And what would the Forum be without the List and Map of Patient-Recommended Hematologists and the Catalog of Articles….

So settle in and join us for a transitional review of one corner of  our MPN world.

 

The List — 100 patient-recommended hematologists…

The Catalog of Articles. .. 

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