International MPN News, Science & Opinion

 Hi, there….

 The July issue of MPNforum is starting to take final shape. Look for it July 15.

      In advance,  on July 5, we will be publish a Special Report on an historical event, the successful completion of a Phase III clinical trial for Ruxolitinib.

     This drug is the first effective therapy for treatment of advanced myelofibrosis. 

     In several ways, this event changes the therapeutic landscape for all of us with MPNs. We will cover the news and its implications in the magazine but the data available to us through posters, charts, and interviews can be more fully shared within the format of a Special Report.  When it’s published we’ll pop a notice in your in-box,

  A note on our Facebook group. 

 Anyone worldwide can read the MPNforum magazine but only subscribers get e-mail notices of new postings  and have the ability to post comments on articles and columns..  The MPNforum magazine is essentially public Internet territory. (Last week, we even made the Google Alert list for myeloproliferative diseases.)

    To let subscribers to MPNforum chat freely with one another about what are often medical matters – and just as often not —  we setup a Closed Facebook group, “MPNforum.”  In this status, subscribers to MPNforum can join the Facebook group simply by going to the site and filing the request.   A group administrator will handle the rest.   You can also join by sending an e-mail to ourMPNforum@gmail.com.

   At the end of July, the MPNforum Facebook group will go to another level of security – Secret – and, theoretically, become invisible to the Internet.   The only way to join the group in Secret status is to be invited.  Subscribers will no longer be able to self-register for the group at the Facebook page but will be able to join by requesting membership at ourMPNforum@gmail.com,.

    Sorry if this all seems a little excessive but many members have jobs ,  insurance issues, or other personal reasons to keep their MPN conversations private.  This double requirement – subscription to MPNforum plus monitored membership in the Facebook group – is no guarantee but it is as close as we can come right now.  There are excellent open MPN groups on Facebook,  “Myelofibrosis Support” and “MPD – Myeloproliferative Disorders” are two we know of.

 Call for volunteers

 It’s always good to work on a project with friends.  Right now, as we move into production, we could use help. If you have proofreading experience or WordPress programming experience, we’ll send the company limo to pick you up and give you a corner office.  OK, maybe not, but if you have some experience and time, let us know at ourMPNforum@gmail.com and we’ll do the next best thing and put you on the Roster of Stars

.  And, as always, is you have an MPN story you want to share, an article to propose, get in touch.

   For our U.S.subscribers, and for all our International subscribers as well… have a safe and happy July 4th Weekend …

 The MPNforum crew

MPNforum, a forum for the worldwide MPN community.

 E-mail:  ourMPNforum@gmail.com

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