Thursday, December 13, 2018

Porphyria Post

December 12, 2018

Porphyria Post

EPP Clinical Trials: Volunteers Needed!
We are close, but we need YOU!

A clinical trial with an oral investigational drug intended to reduce phototoxicity in people living with EPP is underway.

Please note that a Phase 3 study is very unlikely if Phase 2 is not completed. To date, this drug has proven nontoxic and there have been essentially no dropouts in the Phase 2 study to date.

This is an oral drug which makes administration simple.

This study in adults will pave the way for a near-future pediatric trial. EPP is a rare disease and patients must participate in order to get the drug approved. 

To date there is no public information on the availability of Scenesse, and if approved, two drugs on the market may lower their cost.

We will connect you with a Research Coordinator that will answer all your questions and concerns. We will work to make this process as easy as possible for you. 

Eligibility Criteria:
·    Confirmed diagnosis of EPP
·    Provide written informed consent to participate
·    Be willing and able to travel to all study sites for scheduled visits
·    18 - 70 years of age at the time of screening.

Sites enrolling:
·    Mount Sinai - New York City
·    Wake Forest Baptist University - Winston Salem, NC
·    University of Miami - Miami, FL
·    University of Texas Medical Branch - Galveston, TX
·    University of Utah - Salt Lake City, UT
·    University of California San Francisco - San Francisco, CA

We need YOU! Please dig deep and consider being part of this changing moment for all with EPP.

Contact us here at the APF office to get in contact with a research coordinator.
301.347.7166 or 1.866.APF.635

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

Are you interested in participating in this clinical trial?



Harvoni Study - PCT
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?

1.   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.

Are you interested in participating in this clinical trial?



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.
·    Can you predict when your next attack will happen?
·    Are you currently receiving prophylactic heme treatment?

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

Are you interested in participating in this clinical trial?



I have already participated

Panhematin approved in Canada!

Panhematin Approved in Canada to Treat Recurrent Attacks of Acute Intermittent Porphyria
Click on the link below to read this article:

2019 Pet Calendar
Order yours TODAY!
Order your APF 2019 Pet Calendar TODAY! This is a great way to start your year off right and support the APF. 

Calendars are $12 including shipping and can be ordered through the APF Store or by emailing

The calendar is filled with your fluffy companions, dates, and porphyria facts.

Click on the link below to order today!

APF Website
If you have not already done so, please take a moment and bookmark the APF website as one of your favorites!

Here is the Link:

How do you like the newly updated APF website? We would love to hear your feedback!


Still getting used to it!

Emailing my feedback to Edrin @

Get Involved

Contact Information

Is your contact information up to date?
If not please give us a call @ 866-APF-3635 or Email to

American Porphyria Foundation| 1.866.APF.3635 |


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

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