Calling all MPN Patients!

We need your help to Guide FDA Drug Development (take 2 minutes to have an impact):

The MPN Research Foundation, in partnership with your MPN Education Foundation and MPN-NET, UT San Antonio/Drs. Mesa and Scherber, other MPN physician experts, as well as The Leukemia & Lymphoma Society (LLS) and other MPN advocates, is holding a Patient Focused Drug Development (PFDD) meeting with the US Food and Drug Administration (FDA) this September. This meeting is conducted under a new FDA program to ensure that wishes and needs of real patients are addressed by drug development.

If you are living with PV, ET or MF, we want to make sure your voice counts and is heard by the FDA.

Therefore, the partners in this important effort are collecting oral feedback for the FDA via a truly brief phone survey in which we ask only that you answer 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?

This phone survey will only be open for the month of July so please don’t delay dialing at your earliest convenience to let *your* voice be heard. The 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.**

This meeting is open to the public and while in-person registration for the meeting is closed you can participate via webinar (i.e. on the computer). We will keep you informed about how to participate when details are released.  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.  Please help now to make your voice heard!

Detailed information about the FDA’s Patient Focused Drug Development program, and the meetings supporting it can be found here, but please call before you read it all!


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MPN Pain Management and Patient Habit Survey

Researchers are seeking patients with Myeloproliferative Neoplasm (MPN) to answer questions about personal habits and thoughts in an online survey. The purpose of our survey is to learn more about how lifestyle affects patients with MPN.  We want to hear from ALL MPN patients. With this in mind, we hope you will respond to the questionnaire below. The survey should take around 15 minutes to complete.
Please complete the questionnaire to participate.
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