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MPNRF BLOG

  • THE LIFE CYCLE OF A CLINICAL TRIAL

    Author: Raquel Nunez Raquel Nunez joined the MPNRF in 2012 with a kaleidoscope of experience ranging from brand management to community organizing. As the Program Manager overseeing community outreach her main objective is to put MPNRF findings in as many MPN patients hands as possible.

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    “CANCER IS A THIEF”

    Some may wonder what drives someone to become a Cancer researcher. In this video titled “Cancer is a thief” Dr. Ruben Mesa speaks movingly of his personal and professional motivations as a Cancer Center Director, renowned MPN researcher and human being who has experienced personal loss. Thank you Dr. Mesa for sharing your personal story,… Read More »“CANCER IS A THIEF”

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    AFTER AN MPN DIAGNOSIS: QUESTIONS TO ASK YOUR DOCTOR

    Most of us don’t know a lot about myeloproliferative neoplasms (MPNs). If you’ve recently been diagnosed with an MPN, it might be hard to know where to start when getting educated about the disease and what the available treatments have to offer. Especially during these early stages, getting quality information and advice from your doctor… Read More »AFTER AN MPN DIAGNOSIS: QUESTIONS TO ASK YOUR DOCTOR

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    STRATEGIES FOR CHARITABLE GIVING THIS HOLIDAY SEASON

    Strategies for Charitable Giving this Holiday SeasonThree ways to support your favorite charities this holiday season that fit into a smart tax-planning strategy. The holidays are a popular time of year to give to charity. We are in a good mood, feeling generous and may also be looking for ways to lower our taxable income… Read More »STRATEGIES FOR CHARITABLE GIVING THIS HOLIDAY SEASON

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    BRINGING THE VOICE OF MPN TO THE FDA

    On Monday, September 16th, twelve courageous people living with Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis took the stage in Bethesda, MD at the Externally-Led Patient-Focused Drug Development Meeting on Myeloproliferative Neoplasms. They discussed how health events and living with chronic cancer continues to disrupt their lives, their symptom burden, and what strategies they use for… Read More »BRINGING THE VOICE OF MPN TO THE FDA

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    MENTAL HEALTH AND MYELOPROLIFERATIVE NEOPLASMS

    October 10th is Mental Health Awareness Day. What does that have to do with myeloproliferative neoplasms? More than you think. In multiple surveys, people living with an MPN (Polycythemia Vera, Essential Thrombocythemia or Myelofibrosis) have reported a higher rate of anxiety or depression than the general population. A recent study from Denmark coroborated this. Looking at 2,209… Read More »MENTAL HEALTH AND MYELOPROLIFERATIVE NEOPLASMS

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    HOW TO SUPPORT SOMEONE DIAGNOSED WITH AN MPN

    Learning that a loved one, friend or colleague has recently been diagnosed with an MPN may leave you at a loss for what to do or say. You may feel confused. Should you act as though nothing is wrong? Maybe you should tell them about your great aunt who had an MPN. Follow this advice… Read More »HOW TO SUPPORT SOMEONE DIAGNOSED WITH AN MPN

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    ASH 2019 HIGHLIGHTS

    The American Society of Hematology is always a mad dash, a chaotic rush of activity, all focused on blood. MPNRF goes each year to hear the latest and greatest from researchers and companies focused on PV, ET, and MF, both basic science and results of clinical trials. We also use this opportunity to connect with… Read More »ASH 2019 HIGHLIGHTS

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    END OF YEAR 2019

    December 30, 2019 We’re wrapping up another year on earth, and as such, everyone is reflecting on the notable events of the past year or even decade. There are so many highs and lows in the lifespan of a patient advocacy group. The triumph of funding your first grant, of raising your first $100 or… Read More »END OF YEAR 2019

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    THERE FOR YOU, NOW AND AFTER COVID-19

    March 27, 2020 Over a week ago, the U.S. was rocked by the realization that the novel Covid-19 virus was spreading throughout the country. Based in Illinois, the staff at MPNRF have been sheltering in place since approximately March 16th, learning to adapt to this new reality, balancing home and work life from sharing Wifi… Read More »THERE FOR YOU, NOW AND AFTER COVID-19

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  • ABOUT THE BLOG

    Check back regularly for updates about what’s happening in the MPN community, from advocacy to research..

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