International MPN News, Science & Opinion

                     

 

MQJ3
No, you didn’t come to the wrong place…and MPNforum hasn’t had a facelift.
I just wanted to introduce you to the new MPNforum Quarterly Journal that is publishing tomorrow…and pass along your advance copy link in this post.

The link is in the press release I sent out this morning in hopes of getting the Journal into the hands of  MPN patients and physicians. Which is the reason to publish it in the first place:  Raise awareness of MPNs, share current MPN science with physicians in the field, and give interested MPN patients solid information from leading specialists in the field…all in a readable, professional format.

In this first issue, as you can read in the press release below, is the thinking of hematology’s leading figures on diagnosis…the very first step in our successful management of our MPNs. Here too you’ll find a summary of new landmark polycythemia vera study — CYTO-PV — along with objections from physicians and links to primary sources.  Here, J.J. Michiels, a legendary Dutch hematologist, presents his perspective on PV from Dameshek to the present time.

But don’t consider this a passive reading activity. We must get active in distributing information to physicians, patients, caregivers, and associated families. We must raise awareness of MPNs if we’re going to raise money to fund basic research.  It means doing something with the MPNforum Quarterly Journal…Talk about it in your patient support groups, on your Facebook pages, get the conversation started…and hit the FORWARD button to put it in the hands of those who could use it most.

And, when you get a chance, let me know what you think…. You’ll find the link to your copy of MQJ at the end of the news release, below.

Thanks,

Zhen

Top hematologists volunteer services

for patients with rare blood cancer

JUNE, 25, 2013….Whenever you hear about greed and corruption in the medical profession, you might consider the morning of June 7, 2013 and feel a little more hopeful about things.

It was 7AM in the Phoenix offices of Dr. Ruben Mesa, Deputy Director, Mayo Clinic Cancer Center, when six top level hematologists joined him in a trans-Atlantic conference call. They had come together in a roundtable discussion to support patients suffering from a rare blood cancer, myeloproliferative neoplasm (MPN).

On the phone were doctors from the free, internet-based MPN clinic.  Roundtable host Mesa was joined by Dr. Richard Silver (Weill-Cornell), Dr. Srdan Verstovsek (M.D. Anderson), Dr. Hans Hasselbalch (Roskilde Hospital, University of Copenhagen), Dr. Ross Levine (Sloan-Kettering), Dr. Jason Gotlib (Stanford) and Dr. Attilio Orazi (Weill-Cornell). On rounds and unable to participate was MPN Clinic’s Dr. Claire Harrison (Guy’s & St. Thomas.)

Over the past five months, these specialists fielded more than 200 questions from patients and physicians around the world. This early morning roundtable was organized to support a new patient-organized effort, a quarterly journal to further understanding of MPNs and raise awareness of the disease.

Their discussions, “How I diagnose MPNs…” were taped and transcribed for publication in the not-for-profit MPNforum Quarterly Forum. In addition, articles and posters on current therapeutic practices were contributed by Dr. J.J. Michiels, Dr.Juergen Thiele, and Dr. Robyn Emanuel . The Journal is available free on the Internet after June 25 at www.mpnjournal.org.

For their efforts, these hematologists received no perks, no compensation, no honoraria.

They even picked up the phone tab.

Contact:    Zhenya Senyak, Editor, MPNforum Quarterly Journal

MPNquarterly@gmail.com

Comments on: "" (2)

  1. Kathy Van Meter said:

    If one person who asked one of the 200 questions or read one of the 200 answers then proceded to meet with a heme-onc to improve the quality of their treatment, our roundtable specialists will have more than done what was asked of them. Thanks to Zhen and all the docs for seeing the need and taking up the cause of MPN patients.

  2. A magnificent contribution by these altruistic physicians, devoted to the best that being a doctor means and requires. For me they stand on the shoulders of Dameshek, Wintrobe, and Kracke. Without the messenger, Zhenya Senyak, this could not have been conceived and brought to fruition. His efforts are more than a contribution, They are unique. Arch,, MD

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