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
November 1, 2017
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
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 https://www.surveymonkey.com/r/VXTHC37
FDA approval of Jakafi (Ruxolitnib) for the treatment of Polycythemia Vera
NOMINATE YOUR HERO TODAY!
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: www.MPNHeroes.com
- Download the form the website www.VoicesOfMPN.com/nominate-form and mail it to:
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 www.MPNHeroes.com.
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: