Monday, June 25, 2018

Porphyria Post IMPORTANT



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!
Update your records....
We have moved.
The American Porphyria Foundation is excited to announce out move to Bethesda, Maryland - next door to our nation's capital. Please update your records with our new address.
American Porphyria Foundatin
4915 St. Elmo Ave., Suite 105
Bethesda, MD 20814
Telephone: 301.347.7166
porphyrus@porphyria.com
Rare Disease Legislative Advocates is hosting In-District Lobby Days to facilitate meetings for rare disease advocates across the country with members of Congress in their local offices during the 2018 summer in-district work period (July 31st through Sept. 4th).
Meeting with your representative and senators throughout the year is critical to building key relationships. These meetings also provide an opportunity to discuss legislation that is meaningful to the rare disease community, and to highlight the importance of the Rare Disease Congressional Caucus. Make YOUR voice heard as you advocate on behalf of the rare disease community!
Registration for In-District Lobby Days is FREE and open through July 4th. You will be provided the option to specify you availability and the distance you are willing to travel for a meeting.
All In-District Lobby Day participants will be invited to a webinar on Thursday, July 26th,at 2pm EST to go over key legislative issues and tips for successful meetings. Legislative asks will be available RDLA's website by late July.
Get Involved
• Research •
 Donate 
• Visit our Website •
Contact Information
Is your contact Information up to date?
If not please give us a call @ 866-APF-3635 or Email to porphyrus@porphyriafoundation.com
American Porphyria Foundation| 1.866.APF.3635 | porphyriafoundation.org
STAY CONNECTED

"Remember....Research is the Key to Your Cure!"

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