MPN Externally-led Patient Focused Drug Development Meeting

The MPN Research Foundation is hosting an externally-led Patient-Focused Drug Development meeting on September 16, 2019, in Hyattsville, MD. This meeting is a long-awaited opportunity for the MPN patient community to stand in front of decision-makers including FDA regulators, academic researchers, and biopharma representatives to convey the challenges that ET, PV, and MF patients face every day. Our objective is to give MPN patients a platform to share with the world what it means to have an MPN diagnosis, which of their symptoms should be prioritized, and how their disease impacts their quality of life in hopes of improving drug development around this group of blood cancers. 


What is a pfdd Meeting?

The Patient-Focused Drug Development (PFDD) initiative aims to more systematically obtain the patient perspective on specific diseases and their treatments. The patient perspective is critical in helping the FDA understand the context in which regulatory decisions are made for new drugs. PFDD meetings give FDA and other key stakeholders, including medical product developers, health care providers, federal partners, an important opportunity to hear directly from patients, their families, caregivers, and patient advocates about the symptoms that matter most to them, the impact the disease has on patients’ daily lives, and patients’ experiences with currently available treatments. This input can inform FDA’s decisions and oversight both during drug development and during our review of a marketing application. Click here for more.

There are examples of other meetings that have already taken place and resulting reports (www.fastercures.org/programs/patients-count/pfdd/). MPN community has the benefit of publications and studies already focusing on this topic. However, we believe that there will be a positive benefit to presenting all of this information in the form of a “Voice of the Patient” report that will capture relevant information pertaining to the issues they would like addressed by drug development shared by those with PV, ET, and MF. 


Raise your voice with the fda

True Reply
In preparation for the PFDD meeting, we are inviting patients to call a toll-free number and respond to two questions.

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

The number to dial is (877) 851-5399 

En español

Si habla español y desea participar en una encuesta que lo ayudará con la reunión de Desarrollo de Medicamentos Enfocado en el Paciente liderada externamente con FDA para Polycythemia Vera, Essential Thrombocythemia y Myelofibrosis, llame al (844) 284-2226. Está disponible hasta el 31 de Julio. #PFDD

El número para marcar es (844) 284-2226!

    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?

Register to participate

Register to participate in the PFDD meeting either in person
or to watch the entire meeting via webinar!



* There is a limited quantity of tickets for patients to attend the meeting in person.


Attending in Person

The Externally-led Patient Focused Drug Development Meeting for Myeloproliferative Neoplasms is being held at:

College Park Marriott Hotel & Conference Center
3501 University Boulevard
East Hyattsville, MD 20783


Participating via webinar

 

Hosted by

The PFDD is being hosted by the MPN Research Foundation in collaboration with other advocacy organizations in the MPN space such as MPN Advocacy and Education InternationalThe Leukemia & Lymphoma SocietyMPN Cancer ConnectionMPN Education Foundation as well as UT Health San Antonio MD Anderson Cancer Center’s Drs. Ruben Mesa and Robyn Scherber.


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