News and Events
November 1, 2017
MPN Advocacy & Education International Calendar of Events
June 6, 2016
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 [https://www.surveymonkey.com/r/VXTHC37]
FDA approval of Jakafi (Ruxolitnib) for the treatment of Polycythemia Vera
NOMINATE YOUR HERO TODAY!
We are pleased to announce the theme for our Fourth Annual MPN Heroes Recognition Program®, Recognizing the Unsung Hero: Reaching Underserved Communities!
This year’s theme asks nominators to consider individuals or organizations who have significantly contributed to providing services and medical care to underserved MPN populations or who are dedicated to meeting the health care needs of medically underserved* MPN patients. The 2016 theme is an excellent way to bring awareness to the needs of underserved MPN patients and highlight some of the great work being done to address these needs throughout the country.
Please note that nominations are not limited to those who have an impact on underserved MPN patient communities; rather, the theme is meant to promote variation among nominations.
You can nominate a Hero through any of the following ways:
- Fill out an online form on the website: https://www.voicesofmpn.com/nominate-form.aspx
Download the form the website (https://www.voicesofmpn.com/pdf/mpn-heroes-nomination-form.pdf) and mail it at:
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 8, 2016 and recipients will be celebrated at a dinner in December 2016 in San Diego, CA.
For more information, please visit the MPN Heroes™ Recognition Program page (www.mpnheroes.com) on the Voices of MPN website (www.voicesofmpn.com).
*MPN Heroes is a program developed by Incyte Corporation, in collaboration with CURE Media Group, publishers of CURE magazine. Recognition recipients are chosen by an independent panel of judges of doctors, nurses, patients and patient advocates from the MPN community.
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: