News & Events


Survey to help standardize MPN patient questionaires

Drs. Ruben Mesa and Amylou Dueck request that you consider taking a survey to help standardize MPN patient questionaires. These are often critical to the successful conduct of clinical research. Their description and the link is below:

Measuring symptoms is an important part of myeloproliferative neoplasm (MPN) clinical trials. Several questionnaires have been used in the past for patients to rate their symptoms. Each questionnaire includes different instructions, questions, and response choices. The purpose of this survey is to compare these various ways in which we ask people with MPNs to rate their symptoms, and so some questions seem repetitive. This survey will be open for participation until the end of the day on July 19, 2017. Thank you!

Here is the link to the study:

September 23, 2017

2017 Annual SF Bay Area MPN Conference for Patients

Registration limited to the first 100 patients to ensure optimal attendee ratio of patients and MPN luminaries


November 1, 2017

The 9th International Patient Symposium on Myeloproliferative Neoplasms, presented by the Cancer Research & Treatment Fund (CR&T), will be held on Wednesday, November 1 at Weill Cornell Medical College in New York City. 
Patients and their families who attend this full-day event will learn about the latest advances in research developments and treatment, and participate in disease-specific Q&A sessions. This is a unique opportunity to engage with distinguished MPN researchers and physicians from the world’s leading cancer centers.
Spaces are limited. For details and to register online, click here, or call CR&T at 212-288-6604.

MPN Advocacy & Education International Calendar of Events

Click here to view the MPN Advocacy & Education International Calendar of Events


UT Health Cancer Center announces new director

Dr. Mesa is relocating to UT Health San Antonio Cancer Center, TX

Patient Announcement

5 year Results from the Phase 3 Study of Jakafi

Living with MPNs Survey

A 30-minute survey for patients with myeloproliferative neoplasms (MPNs). A research study (sponsored by Incyte Corporation) is being conducted to learn more about the impact of MPNs on patients’ lives. Incyte is seeking patients aged 18 to 70 with MF, PV or ET to participate in a one-time, 30-minute online survey about how your condition has affected your work, finances, and quality of life. If you are eligible and complete the survey, you will be compensated.For more information, please visit

FDA approval of Jakafi (Ruxolitnib) for the treatment of Polycythemia Vera


Nominations are now open for the 2017 MPN Heroes® Recognition Program!

As we enter the fifth year of the Myeloproliferative neoplasms (MPN) Heroes Recognition Program, we are excited to continue to build upon the success of the past four years! Since the launch of our program in 2013, MPN Heroes has raised awareness of MPNs and has helped recognize individuals and organizations in the MPN community who demonstrate excellence in care or exhibit leadership through the advancement of science. By recognizing these individuals and organizations in the MPN community, we have helped to raise awareness of not only MPNs, but also rare diseases in general; a fact which makes us very proud!

Raising awareness of rare diseases benefits all patients and families affected by rare diseases.

Our goal in recognizing MPN community Heroes is to highlight their excellent work, as well as increase their ability to serve the MPN community with the hope that more research, more support and more solutions will emerge. Over the past four years, 16 organizations supporting MPNs have increased their ability to continue their excellent work through charitable donations made in recognition of MPN Heroes efforts to increase awareness and education about MPNs.

We encourage you to nominate a Hero through any of the following ways:

  • Fill out an online form on the website:
  • Download the form the website and mail it to:
    • Heroes
      c/o Incyte Corporation
      PO Box 4691
      Trenton, NJ 08650-4691
  • Call 1-844-MPN-HERO and provide the information needed to fill out the form

Nominations will close on September 14, 2017 and recipients will be celebrated at a dinner in December 2017 in Atlanta, GA.

For more information, please visit the MPN Heroes Recognition Program page at

National Organization of Rare Diseases

Stories about 3 patients (Antje with ET, Annette with PV and Bill with MF) on the NORD website:


The MPD Research Consortium is a National Cancer Institute supported project involving 50 International MPN Centers in the United States, Canada, Europe and Israel. It is a resource for both patients and physicians focusing on advancing the science and therapy of myeloproliferative neoplasms

Are You a Vietnam Veteran?

Were you exposed to Agent Orange? Do You Have Myelofibrosis (MF), Polycythemia Vera (PV) or Essential Thrombocythemia (ET)?

MPN Advocacy and Education International is conducting a survey of Vietnam Veterans to determine how many were exposed to Agent Orange and now have a diagnosis of Myelofibrosis, Polycythemia Vera, or Essential Thrombocythemia (Myeloproliferative Neoplasms- MPNs. This information will be collected in an attempt to add myeloproliferative neoplasms to the US Department of Veterans Affairs ‘presumptive’ list of conditions resulting from exposure to Agent Orange/dioxin during the Vietnam War and could create a resource for assistance with treatments and compensation.

This is our first step in what could allow for further research into the link between myeloprliferative neoplasms and exposure to Agent Orange/dioxin.

Please contact Ann Brazeau: