International MPN News, Science & Opinion

Spring- 2016

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(The  Spring issue introduction is Here.)

The FDA Report Card…
THE REPORT

Of the various drug review divisions within the FDA, the Office of Hematology and Oncology Products is the fastest, most productive and most efficient. Its dismal MPN performance is thus doubly disturbing. Hopefully this Report Card can help open a dialog to support the FDA  in providing safe and effective drugs to MPN patients.

Overall, the MPN FDA group failed Effective Performance by its unexplained lapse in safety monitoring; abrupt closure of a trial causing unnecessary harm to patients (CTI’s pacritinib)… Story here

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Clinical Trial? Think again…

prescription-bottle---The FDA says it’s frustrated. The agency would really like to tell us what made them suspend the pacritinib trial. They can’t. Federal regulation you know.

Sorry, says CTI BioPharma. We would really like to release the pacritinib data but we can’t. It would jeopardize the trial.

Cynical trials. Why do we not howl in outrage at these responses? The “data” they’re talking about is our lives, our dosing with their drugs, our deaths. To get these data we had to be measured, bled, poked, thumped, scanned, hospitalized and buried. This isn’t their data, this is our life’s blood quite literally. These are our data. Story here

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Go take a hike! For yourself, for myelofibrosis…

boots When you get tired of hearing “There’s no cure for myelofibrosis” you can get up and do something about it, something meaningful. Julie Libon, an MF patient, rallied her family and friends last year and kicked off HikeMF.

That little walk in the woods netted the MPN Research Foundation over $25,000. And they’re doing it again this year.

Supporting MPNRF matters. In the past decade, every major leap forward in unraveling the causes and cures for MF have been boosted by the Foundation’s grants… over $11 million in grants so far. If you can’t head up to Sharon, Massachusetts on May 21 you will miss Spring up in the Moose Hill Wildlife Sanctuary…but you don’t have to miss the party Story here

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free rev

 

The best things in life are free…sort of.

You already know MPNforum is the only MPN magazine that provides professionally reported MPN news, analysis, photo features, patient stories, and events. We throw in editorials, the List, advice from top docs, tributes and even comics at no additional charge.

We translate Ross Levine, collar FDA officials, provoke CEOs and puncture bombastic medical claims. We poke around labs, spend our time with genes and zebrafish to bring you the news.  And it’s all Free. Free to read, free to share.

But it’s not free to produce. So how about it?

This is the MPNforum Small Donation Program.

Support your all volunteer MPNforum with a small donation. Anything from $5 to $100. It’s your vote of confidence…a way to let us know that despite everything, you still love us.

Sure, it’s tough to stop what you’re doing, dig out your wallet and click the DONATE link. Do it because you know you should. Do it because we’re worth it..

Besides, it’s a great deal. Kick in a couple of bucks and feel good about yourself…and make us happy at the same time.

(Do it for love.)

Thanks

Zhen and the whole happy MPNforum crew.

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MPNforum, PO Box 17142, Asheville, NC 28816
Donations to MPNforum are not tax-deductible

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        MPNforum’s Year in Review — 2015 in Posters.

finger pointing small       (Poster hall this way.)

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Letters... (Open mailbox here)

         On Medicare covering and not covering my stem cell transplant. 
         How I was removed from a clinical trial.

 

Circus illustration: Nik Wachter, Twin City Model RR Museum

 

header linegold starUpdated March, 2016: The New List of Patient-Recommended Hematologists

The MPNclinics – 302 answers to 141 Patient questions… with Index

mGEN-logo FINAL tightThe MPN Genetics Network .. Report on CRISPR gene therapy

The Catalog of MPNforum Articles. ..

Subscribe to MPNforum

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Tell your story, express yourself, share your experience in your MPN magazine. You can add your comments to MPNforum articles, list your Blog, or write an article. (We’ll even help you get started.)…Letter to the Editor

For information Contact: ourMPNforum@gmail.com

© MPNforum, LLC , MPNforum.com, and the MPNforum Quarterly Journal 2016. MPNforum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License. Reproduction is permitted provided full and clear credit is given to authors and MPNforum.com with appropriate and specific direction to the original content.

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