News

Click on the bold blue text below or on a topic listed on the left side of the page to read more.

Jun 24, 2015

Telemundo TV has contacted us to do a show on EPP. If you have EPP and live in the Los Angeles area, please contact the APF. They are looking for children and adults. Please contact us soon as possible by replying to this email, or by calling us at 713.266.9617.

Jun 17, 2015

We have received a great deal of media attention within the last month. We had two major TV programs:  Discovery Life "Diagnose Me" covering AIP and NBC "Dateline: Out of the Shadows" covering EPP.  Also on June 15, a story of a young girl, Savannah Fulkerson (11), with EPP was published by CBS Los Angeles.

Jun 11, 2015

Jun 04, 2015

We are looking for patients volunteers for the 7201 Longitudinal Study of the Porphyrias. Participants of this study DON'T have to travel to the research site. All that needed is to answer porphyria-related questionnaire over the phone. You will be working closely with porphyria experts and researchers.  

The purpose of this long-term follow-up study is to provide a better understanding of the natural history of porphyrias, as affected by available therapies, and to aid in developing new forms of treatment.

May 29, 2015

The APF, in collaboration with Alnylam Pharmaceuticals, clinicians from the American Porphyria Consortium and The European Porphyria Network are currently enrolling patients in the EXPLORE trial, a prospective observational study of patients with acute hepatic porphyrias - including AIP, variegate porphyria, and hereditary coproporphyria - suffering from recurrent attacks.

With this study, Alnylam and clinical investigators aim to learn more about the clinical course, management, and disease burden of patients with acute hepatic porphyrias that suffer from recurrent attacks.

May 20, 2015

If anyone is planning to attend the European Patient Day conference in Dusseldorf, please contact the APF.  The APF will be hosting a gathering for our USA patients to meet with the experts in the Porphyria Consortium who are attending the International Porphyria and Porphyrins Congress. 

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.

Subscribe to The American Porphyria Foundation: News