Shadow Ride Kick Off Update
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Apr 10, 2015
Apr 01, 2015
Our member Robert Hutson created a fundraiser that sells t-shirts. The Cook family, in addition to the traditional Hat Day, will distribute APF rubber bracelets for $1 each at local schools in the city of Vernon TX.
Mar 25, 2015
National Porphyria Awareness Week is coming up soon, what will you do this year to educate your community about porphyria?
Mar 18, 2015
National Porphyria Awareness Week (NPAW) 2015 is just around the corner, April 11-18!
Mar 04, 2015
We are continuing to fly participants to the research sites for the Natural History Study of Acute Liver (Hepatic) Porphyrias.
Feb 27, 2015
Feb 19, 2015
Finnian, nicknamed Finn, can show us a thing or two about promoting porphyria awareness. He wears his American Porphyria Foundation bandana proudly. The APF gave bandanas to all the pets, who entered the APF Pet Beauty Contest a few years ago. Finn is a 7 year old yellow lab. His mom is APF member, Kelsey Castro who says of Finn:
He is my best buddy! He is always by my side, especially when I'm not feeling well... I think he can sense it. I got him when I was 14 and in high school, and I'm now in college. Finn has been my best friend through lots of hard times. His favorite thing to do is go on hikes at a local nature reserve by my house and curling up by our wood stove in the winter.
Feb 16, 2015
28 February 2015 - Rare Disease Day. It takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
Feb 05, 2015
Our APF members set a great example of different activities that increase awareness in their local communities. Let's continue the tradition! In preparation for NPAW, April 11-18, 2015, the APF will send you a packet with brochures, a complimentary DVD and extra materials if you would like to distribute information in your area.
Jan 28, 2015
This week more than 40 porphyria experts, PTF trainees and clinical research coordinators will be meeting at University of Texas Medical Branch in Galveston, TX to advance the porphyria education and research training.
Training agenda items include, but not limited to: