Wednesday, December 19, 2018

Porphyria Post

Porphyria Post

Happy Holidays from the APF!

The American Porphyria Foundation will be closed for the Christmas holiday beginning on Monday, December 24, 2018 and will re-open for normal business hours on Wednesday, January 2, 2019.

For emergency medical attention, please go to your nearest emergency room and contact your primary care physician. For all other issues, please direct your needs to the APF office staff via email. Your messages will be answered accordingly.

Desiree Lyon - lyonapf@aol.com
Kristen Wheeden - kristen@porphyriafoundation.org

We hope that you enjoy this Christmas and New Year’s holiday with your loved ones.
Reminders!

EPP Clinical Trial Participation - We need YOU!
Please note: CANADIANS ARE NOW ELIGIBLE TO PARTICIPATE!

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
porphyrus@porphyriafoundation.com

"Remember...Research is the key to YOUR cure!"
Each Step Toward Finding an Effective Treatment is Important!
Pet Calendars on Sale!
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 autumnlee@porphyriafoundation.org.

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

Click on the link below to order today!
https://porphyriafoundation.org/store

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.

Get Involved

• Research •

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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