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Continue Raising Awareness Year Round

Continue Raising Awareness Year Round
We, at the American Porphyria Foundation, would like to THANK YOU for participating in National Porphyria Awareness Week. We are very grateful for everyone who submitted their photos and notified us of their awareness activities. If you are still interested in continuing to RAISE PORPHYRIA AWARENESS,contact the APF.
If you have not shared your photos with the APF, please do so, we would love  to see them. Don't stop now! Continue to RAISE PORPHYRIA AWARENESS!
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!"


  1. Hopefully this year approval of Scenesse, a very succesfull medicine for EPP patients. Without almost any side effects but lifechanging according to many European patients.


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The APF asked our Facebook friends for their top questions they would ask a porphyria expert.
 The following questions were submitted to Dr. Wang for his responses ... Q. Does EPP give us bad teeth? Also, do people with EPP get stomach pains or is that with the other porphyias? A. The porphyrin that accumulates in EPP patients is protoporphyrin IX, which does not cause discoloration to teeth or abdominal pain.
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