National Porphyria Awareness Week continues!


Louise Schlosser decided to educate doctors, nurses, and other healthcare professionals at the University of California, Irvine Medical Center about porphyria. Louise shared her story and left behind several resources provided by the APF to help educate many about this rare disease.

 Louise Schlosser


Nicholas, son of APF staff member Susan Nieuwold-Smith, wears an APF T-Shirt to support awareness week activities. Thank you, Nicholas!

 Nicholas Smith


Members of the APF staff wearing APF T-shirts, purple ribbons and a 

bandana. Pictured from left to right (Jessica, Edrin & Yvette)

 APF Crew


Rob Saupe' wearing an EPP T-shirt designed by Cassie Tucker in support of porphyria awareness!

Rob Saupe 



Patient Education Meeting!

jpeg INVITE 

Patient Education Meeting: May 10, 2017

Call the APF to RSVP TODAY!!!!!


The challenge of living with porphyria starts with how little is known about it among friends, family and the medical community. That is why National Porphyria Awareness Week is so important.  It provides each of YOU with the opportunity to enhance porphyria awareness in your sphere of influence.  Here are some suggestions for ways that you can help:

*SHARE knowledge about porphyria at your doctor's offices and local hospitals.  You might suggest that they host a seminar or grand rounds on porphyria; ask if there is a local meeting where you can hand out materials.

*ASSIST at medical conventions or health fairs to educate family, friends, and physicians on porphyria.

*Tell your story to local media. Television, newspapers and community magazines are looking for human interest stories about people who have encountered a major illness and have undertaken the challenge.

*VOLUNTEER your talents or skills to help achieve the educational programs of the APF.  For example, donate one of your paintings, sculpture, computer expertise, business acumen etc. for our fall raffle or to help APF.

*HOLD a community race, car wash or other fund raising activity.

*HONOR your loved one with a gift to the APF for a birthday, anniversary, holiday or memorial tribute.

*WRITE a letter to friends and family asking them to consider making a donation;

The APF can help you accomplish this goal by providing materials:

  • Porphyria Brochures
  • Porphyria Live DVD
  • Fact sheets
  • A PowerPoint Presentation
  • Information for Grand Rounds
  • Ideas to set up Medical Seminars
  • Ideas to exhibit at a Health Fair
  • Information to gain press
  • Doctor packets sent to your doctors
  • Press Releases

Contact the APF TODAY for more information at 1.866.APF.3635!


"Remember....Research is the key to your cure!"