Volunteers Needed! Clinical Trials and More...

  • Wednesday, September 26, 2018

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 orgeneral@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!