Welcome to the APF! Clinical Trials and more Patient Education Meetings-RSVP Today

  • Wednesday, September 19, 2018

Welcome to the APF, Autumnlee!

We are excited to welcome aboard our newest APF team member, Autumlee Meyer.

We are so excited to have you here with us and wish you nothing but the best in your future with the APF.

Please extend a warm welcome to Autumnlee! Email her at autumnlee@porphyriafoundation.org or give her a call at 301.347.7166 to say hello.


EPP Clinical Trials

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 orgeneral@porphyriafoundation.org

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


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.


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.


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



Patient Education and Support Meetings coming your way. Contact the APF today to RSVP! We look forward to seeing you there.

Patient Education and Support Meeting - Cincinnati

Cincinnati Children's Hospital | 3333 Burnett Ave. | Room D2.28 | Cincinnati, OH 45229

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!
By phone at 1.866.APF.3635 or by email at edrinw@porphyriafoundation.org


Patient Education and Support Meeting - Missouri

Mound Ridge Retreat and Mission Center | 31 Agape Lane | Cook Station, MO 65449

10/27/18 12:00pm - 10/27/18 2:00pm

Question and Answer session by Porphyria Expert via Skype. Family and Friends are welcome to attend. Lunch will be provided.

RSVP By phone at 1.866.APF.3635 or by email atedrinw@porphyriafoundation.org


Patient Education and Support Meeting - San Francisco

UCSF Medical Center | 505 Parnassus Ave.| Room: S-157| San Francisco, CA 94143

11/11/18 5:30pm - 11/11/18 7:00pm

Seating is limited. Please RSVP Today!!
By phone at 1.866.APF.3635 or by email at edrinw@porphyriafoundation.org