FDA Meeting for Acute Porphyrias is March 1st!


The APF will be hosting a Patient Focused Drug Development (PFDD)meeting for the Acute Porphyrias on Wednesday, March 1,  2017 @ 8:30am-12:50pm EST  at the College Park Marriott Hotel & Conference Center (address: 3501 University Blvd E, Hyattsville, MD 20783).  This meeting will take place in the morning and will be attended by FDA representatives.  If you cannot attend in person, you may join via webcast. 

  • The APF meet and greet will be on February 28th at the College Park Marriott (same place as FDA meeting the next morning).  The room will be open for an informal meeting space from 5-6PM and there will be a mandatory preparation meeting for all attendees from 6-7PM.
  • FDA Meeting: March 1, 2017 8:30-1:00

Please let the APF know if you plan to attend this meeting!
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What are PFDD meetings and why is it important to attend?  PFDD meetings give the FDA an important opportunity to hear directly from patients, patient advocates, and caretakers 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 the FDA's decisions and oversight both during drug development and review of a marketing application.  This initiative has the potential to change product development in fundamental ways.

Hotel Rooms   There are a number of hotels in the area and the FDA provides a list here: Fda list of hotels


The Voice of the Patient Report from the March 1, 2017 Meeting.
Click here to read the in depth report.

Recording of the Live Event! 

Mar 1 2017 - 8:30am