Wednesday, June 15, 2016

EPP Date with the FDA

HOORAY!! The APF, with your help, got an EPP meeting with the FDA! The meeting is scheduled for October 24, 2016 from 10am - 4pm (EDT) at the FDA. The FDA will be observing how many people are interested in this meeting so we need as many people as possible to attend. We MUST show them the extreme need for treatment. Great work, everyone! See below for more details!
Register here:
Dear Stakeholder,
On behalf of the Food and Drug Administration (FDA), we invite you to an upcoming public workshop on Erythropoietic Protoporphyria (EPP) to be held October 24, 2016 from 10am-4pm (EDT) at the FDA Campus in Silver Spring, Maryland. Specific details are outlined below.
The public workshop is intended to discuss how best to facilitate and expedite the development of safe and effective drug therapies to treat signs and symptoms related to EPP. FDA will provide information for and gain perspective from patients and patient advocacy organizations, health care providers, academic experts, and industry on disease symptoms and its impact on patients' daily life, patient experience with current treatment regimens for EPP, and various aspects of clinical development of products intended to treat EPP.
We're asking you to help make this workshop a success by encouraging patients, patient representatives, health care providers, academic experts and industry to participate either in-person or through the live webcast. FDA needs your help to make this workshop a success. Please direct stakeholders to the links below to register and to learn more about the workshop.
Workshop website: Scientific Workshop on Erythropoietic Protoporphyria
We look forward to this exciting workshop and hope to see you there. If you have any questions, please feel free to contact us at
Use the link below to sign up:
                                               "Remember....Research is the key to your c

No comments:

Post a Comment

Frequency of Porphyria

The exact prevalence of  porphyria  is unknown, but it probably ranges from 1 in 500 to 1 in 50,000 people worldwide. Overall,  porphyria  ...