Let the FDA know about your experience living with PV, ET or MF!

You may have heard that MPNRF, along with fellow MPN advocates, is holding an externally-led Patient Focused Drug Development meeting with the FDA this September. If you are living with PV, ET or MF we are making sure your voice counts and is heard by the FDA. One of the means of doing this is collecting feedback via a quick phone survey with two questions:

  1. What has been the most difficult part of living with this disease for you?

  2. How has your diagnosis impacted the fulfillment of your life goals?

It will only be open for the month of July so please don’t hesitate to dial in and participate at your earliest convenience! Responses to this survey will be used in an audio montage of patient testimony during the meeting as well as in the follow-up Voice of the Patient report.  

The number to dial is (877) 851-5399

There will also be the opportunity to attend in person or via the webinar as this meeting is open to the public. Our goal is to represent all perspectives from the MPN community so that FDA is as well informed as possible about YOUR experience living PV, ET, and MF as they look at clinical trial designs, data, outcome measures, etc. 

Author: Michelle Woehrle

Michelle Woehrle joined the MPN Research Foundation in 2007 after being inspired by their mission to fund research that will improve the lives of people living with the rare blood cancers PV, ET and MF. In 2015 she was promoted to Executive Director. She has assisted with the expansion of the grants program, grassroots initiatives to connect with more patients internationally and optimize operations for the Foundation.

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