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Showing posts from June, 2018

Family, Friends, Spouse of an EPP Hero Please Write FDA a Letter

THANK YOU TO ALL FOR YOUR LETTERS REQUESTING PRIORITY REVIEW FOR SCENESSE!
They are starting to pour into the APF office. Haven't taken a moment to write yet...now is the time. Don't delay.
ADDRESS TO:
Scott Gottlieb, M.D.
FDA Commissioner
U.S. Food and Drug Administration
10903 New Hampshire Avenue
Silver Spring, MD 20993
Dear FDA Commissioner:
MAIL TO:
American Porphyria Foundation
4915 St. Elmo Avenue, Suite 105
Bethesda, Maryland 20814 OR EMAIL TO:
porphyrus@porphyriafoundation.com

Porphyria POST regarding Letters & Trial Info

You can be a medical hero! A new investigational drug for EPP is ready for clinical trial. All we need to begin is YOU! The trial spots will fill up fast…join now! Contact the APF on 1-866-APF-2635 or email
porphyrus@porphyriafoundation.org to be connected to a study site. Don’t wait! Remember…Research is the
Key to Your Cure!


An oral investigational drug has been developed with the potential to increase sunlight duration and tolerance in
individuals with EPP. This phase II clinical trial is needed to understand if the investigational drug works and to
ensure that it is safe. The study duration is 24 weeks including follow-up. You must be age 18-70 to participate
and have a confirmed diagnosis of EPP. All travel is included and will be arranged by a concierge service.


"Remember...Research is the key to YOUR cure!"


Each Step Toward Finding an Effective Treatment is Important!


Porphyria Post Request The New Drug Application for Scenesse has been submitted to the FDA. Now is the tim…

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:
Ma…

Research is the key to your cure!

Research is the key to your cure! 

What is the most important element in research?

 YOU! 

You now have an opportunity to participate in a trial for a new EPP investigational drug. Contact the APF for details. 

YOU are our hope for the future. Contact the APF on 1-866-APF-3635 or email porphyus@porphyriafoundation.org.

An oral investigational drug has been developed with the potential to increase sunlight duration and tolerance in individuals with EPP. 


This phase II clinical trial is needed to understand if the investigational drug works and to ensure that it is safe. 

The study duration is 24 weeks including follow-up. You must be age 18-70 to participate and have a confirmed diagnosis of EPP. All travel is included and will be arranged by a concierge service.

"Remember...Research is the key to YOUR cure!”


Each Step Toward Finding an Effective Treatment is Important!

EPP Clinical Trial

You can be a medical hero! A new investigational drug for EPP is ready for clinical trial. All we need to begin is
YOU! The trial spots will fill up fast…join now! 

Contact the APF on 1-866-APF-2635 or email
porphyrus@porphyriafoundation.org to be connected to a study site. 


Don’t wait! Remember…Research is the
Key to Your Cure!


An oral investigational drug has been developed with the potential to increase sunlight duration and tolerance in
individuals with EPP. This phase II clinical trial is needed to understand if the investigational drug works and to
ensure that it is safe. The study duration is 24 weeks including follow-up. You must be age 18-70 to participate
and have a confirmed diagnosis of EPP. 

All travel is included and will be arranged by a concierge service.
"Remember...Research is the key to YOUR cure!"


Each Step Toward Finding an Effective Treatment is Important!


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 Commiss…