News

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May 13, 2015

May 09, 2015

Discovery Life Channel features a show "Diagnose Me" with an episode on acute porphyria with Dr. Lisa Kehrberg.
This program aired on, 5/8/2015, at 9 PM Central Time.

 

May 06, 2015

Apr 29, 2015

Article in the Tulsa World by MICHAEL OVERALL

 

Today we are sharing a powerful article published recently in the Tulsa World. Read the full story and join the conversation:

Apr 22, 2015

Apr 15, 2015

The Kick Off Event of the Shadow Ride was a huge success! Thank you all for coming and having fun with us. More details and photos to follow.

Apr 10, 2015

Shadow Ride Kick Off Update

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:

Jan 21, 2015

In preparation for National Porphyria Awareness Week, 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 communities.

Jan 07, 2015

Everyone loves a cowboy love story, and you will love this true story about APF member, cowboy Scott MacMeeken and his beautiful bride Michelle.  After they married, Scott saw firsthand how difficult it was for Michelle to live with the severely photosensitive porphyria, Erythropoietic Protoporphyria (EPP).  Like many EPP patients, Michelle suffered from the searing pain and swelling upon venturing into the sunlight.  EPP patients are often seen jumping from shadow to shadow to avoid the painful light. 

Dec 17, 2014

Tara Cantley is one of the most recent patient volunteers to enroll in the Longitudinal Study, Panhematin Study and the Natural History Study of Acute Liver (Hepatic) Porphyria.

Dec 10, 2014

The APF just came back from the 56th ASH Annual Meeting, which was held in San Francisco, CA. More than 20,000 hematologists and health professionals in the field were in attendance. The APF educated physicians, professionals and everyone interested.​

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