Look at what's going on! 


It's National Porphyria Awareness Week!

We have been getting submissions on what people are doing to RAISE PORPHYRIA AWARENESS! See their efforts below!

Jared Ulmer (Porphyria J) was contacted by a student named Ashly from Whitehall High School in Mechanicsville, PA to share his story with Ashly's honors genetics class! Way to go Ashly!


John Krause chose to share his story on social media to raise porphyria awareness!



Here are some photos from people raising porphyria awareness!

Justin Hamilton created a Pic Collage to raise CEP Awareness!

 CEP Porphyria Awareness


Cassie Tucker and her son Mitchell created a T-shirt campaign to raise awareness for EPP! Cassie donated a portion of the proceeds to the APF! Thank you, Cassie and Mitchell!

 Cassie Tucker2 Cassie Tucker1 


Kristen Wheeden and her son Brady (EPP) wearing APF gear in support of NPAW!

 Kristen Wheeden


Terri Witter wearing APF gear in support of NPAW!

 Terri Witter


Tammy Smith wearing APF gear in support of NPAW!

 Tammy Smith


Lina Rebeiz wearing APF gear in support of NPAW!

 Lina Rebeiz


Lakeshia Johnson painted her nails purple in support of NPAW!

 Lakeshia Johnson


WOW! Thank you all for your continuing support in our National Porphyria Awareness Week efforts.  You can use anything in life to promote awareness!

Think about what you can do to heighten awareness! It's not too late!


National Porphyria Awareness Week provides each of YOU with the opportunity to enhance porphyria awareness in your local and medical communities.  

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 at 1.866.APF.3635 or 713.266.9617


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