Volunteers Needed! Clinical Trials and More...

Volunteers Needed!

The APF will be exhibiting at the two conventions this fall. Are you interested in volunteering at our booth? If so, please contact Edrin Williams, Director of Patient Services for additional information (edrinw@porphyriafoundation.org or 301.347.7166). This is an incredible opportunity to raise awareness about porphyria to those with little knowledge about this rare disease.


AASLD: San Francisco, CA
Sunday, November 11 – 9:30 am - 3:00 pm time slots available
Monday, November 12 – 9:30 am - 3:00 pm time slots available

ASH: San Diego, CA
Saturday, December 111:00 a.m. - 5:00 p.m. time slots available
Sunday, December 210:00 a.m. - 5:00 p.m. time slots available
Monday, December 310:00 a.m. - 2:00 p.m. time slots available


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 or porphyrus@porphyriafoundation.org

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


Access to Care Toolkit for the Acute Porphyrias

A downloadable Access to Care Toolkit is a resource designed to help patients living with Acute Intermittent Porphyria (AIP), Hereditary Coproporphyria (HCP), and Variegate Porphyria (VP) or their caregivers, loved ones and healthcare providers secure access to Panhematin at their preferred health facility. We have recently learned of patients who are being denied this treatment from some hospitals and directed to secure another healthcare provider. If this has happened to you or someone you know or care for, please use these tools to request help from your state and local representatives and health advocacy organizations. We understand the debilitating effects of acute porphyria and hope these resources will help you secure access to Panhematin when you need it most.

The Toolkit contains the following materials:

  • Healthcare Conversation Tracker is a simple form to record your conversations with doctors, insurance agents, etc.
  • Customizable letter templates to record your details to use for doctors, state departments, insurance, etc.
  • Access to Care Fact Sheet defines AIP, its symptoms and why it's important for patients to get immediate care
  • Patient Bill of Rights can be used to support your appeal for access to treatment

This Toolkit can be found HERE. Contact the APF office today if you have questions!


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

We appreciate everyone who sent in their RSVP! We hope to see you on Saturday!!

See you on Saturday!


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