It's all about Porphyria!

National Porphyria Awareness Week continues...

Administrators, students and teachers from Vernon Middle School  decided to wear purple in support of National Porphyria Awareness Week. LeeAnn Cook, thank you for sharing these awesome photos. We, at the American Porphyria Foundation, encourage everyone to continue to RAISE AWARENESS in your local communities. Contact the APF to get more information. See the photos below from Vernon Middle School.


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The challenge of living with porphyria starts with how little is known about it  among friends, family and the medical community.   


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
  • A  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!"