Monday, April 10, 2017

NPAW April 22-29 2017

National Porphyria Awareness Week: April 22 - 29, 2017
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 Edrin TODAY at 713.266.9617 or edrinw@porphyriafoundation.org to get involved. 

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

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NIH Updated Info on the Porphyrias 3/22/17

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