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Porphyria Post

Holiday Office Closure
The American Porphyria Foundation will be closed on Monday, September 3, 2018 and will re-open for normal business hours on Tuesday, September 4, 2018 in observance of Labor Day. Enjoy your weekend!

Take a look at our reminders below!

Safe/Unsafe Drug Questionnaire for the Acute Porphyrias (AIP,VP,HCP & ADP - VERY IMPORTANT
The APF is collaborating with researchers to identify new safe and unsafe drugs. We need your help. Are you experiencing adverse effects with any of your new medications? If so, please let us know in the questionnaire below how it affected you. We will share these results with our team of renowned Porphyria experts/researchers. They are in the process of updating our safe and unsafe drug list for the acute porphyrias. Your donations will help us educate physicians about the dangerous effects of unsafe drugs. Please click on the link below for the Questionnaire.

Safe and Unsafe Drug Questionnaire

http://files.constantcontact.com/b87e847f601/4fe39809-2871-4aa8-995c-e3d6c2ce606e.pdf

Panhematin Study - Participants Needed!
Do you have AIP, VP or HCP? Are you interested in participating in research? If so, we are recruiting volunteers for the Panhematin Study.

Our researchers need people to volunteer for the Panhematin study. Completing this study will help prevent insurance companies from not paying for this treatment.

The purpose of this study is to determine if Panhematin is safe and effective for prevention of acute attacks of porphyria.

Please contact Edrin at the APF office (301.347.7166) if you are interested in participating.

Harvoni Study - PCT
Do you have PCT? Are you interested in participating in research? Do you have Hepatitis C? If you answered YES to these questions, this is for you.

We need YOU for a clinical trial!

The purpose of this clinical trial is to assess whether Harvoni alone is an effective therapy in active PCT patients with Chronic Hepatitis C.

Who can participate?

• Adult patients with PCT who also have Hepatitis C

If you are interested in participating please contact Edrin Williams, Director of Patient Services at the APF office at 301.347.7166 for additional information.



EPP Clinical Trials – Participants Needed!
Are you ready to be a medical hero? A new clinical trial with an oral investigational drug intended to reduce phototoxicity in people living with EPP has begun. Don’t delay – contact the APF to learn more at 1-866-APF-3635 or porphyrus@porphyriafoundation.org

"Remember...Research is the key to YOUR cure!"
Each Step Toward Finding an Effective Treatment is Important!


Patient Education and Support Meeting

LOCATION
Cincinnati Children's Hospital | 3333 Burnett Ave. | Room S1.204 | Cincinnati, OH 45229
DATE AND TIME
09/29/18 11:00am - 09/29/18 2:00pm
This meeting will be hosted by Audrey Schering and Brandy Nicole Smith. Please let us know if you will be in attendance!

I'll be there!

Maybe

I can't make it



FDA- Chronic Pain PFDD Meeting docket comments
The last day to send in docket comments for the Chronic Pain Patient-Focused Drug Development (PFDD) Meeting is Monday, September 10, 2018! We encourage patients with chronic pain and other stakeholders to submit written comments through the regulations.gov website: https://www.regulations.gov/document?D=FDA-2018-N-1621-0001. We carefully review and consider all comments.

In addition, we want to let you all know that the meeting recording, materials, and full transcript are available on fda.gov: https://www.fda.gov/Drugs/NewsEvents/ucm603093.htm.


Thank you for participating in this meeting and in sharing your experience. If you have any questions, please email: Patient.Focused@fda.hhs.gov.

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