Thursday, June 28, 2018

PORPHYRIA POST URGENT

Porphyria Post
Request
The New Drug Application for Scenesse has been submitted to the FDA.
Now is the time to work hard as patient advocates.
The APF is launching a new campaign to request Priority Review
Now is the time to send your letter requesting priority review for Scenesse. We need to move Scenesse, a long-awaited treatment for EPP, through the regulatory process as quickly as possible. Now that a complete new drug application has been submitted to the FDA - they have the option of granting priority review which moves the process faster. Please share with the FDA...
* That there is no treatment for EPP
* That there is an unmet medical need for a treatment for EPP
* That living with EPP is a tremendous burden
* How living with EPP affects your quality of life
It is important that you send your signed letter to the APF immediately.
Begin your letter:
Scott Gottlieb, M.D.
FDA Commissioner
U.S. Food and Drug Administration
10903 New Hampshire Avenue
Silver Spring, MD 20993
Dear FDA Commissioner:
Mail your letter to:
American Porphyria Foundation
4915 St. Elmo Avenue, Suite 105
Bethesda, Maryland 20814
Alternatively you can scan your signed letter and email it to porphyrus@porphyriafoundation.com.
All letters must be signed.
We will present all of the letters at once to the FDA!
Please send letters today or ASAP! Time is of the Essence!

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