News

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Aug 05, 2015

Is Your Membership Up to Date?

Jul 29, 2015

Shawn Willis is a dynamo in everything he undertakes. He is the owner of the Chick-Fil-A stores in Burlington, NC.  On August 28, Shawn hosts the MOVE IT Moonlight Run from for porphyria awareness to help fund the APF educational programs.

Jul 15, 2015

Your APF Membership

We are currently working on the 4th quarter Newsletter, where you can find latest news, updates and stories from the porphyria world. Our members, who made deductible charitable contributions, will receive the fresh issue.

Jul 11, 2015

I am very pleased and proud to announce that by a vote of 344-77, the United States House of Representatives passed the 21st Century Cures Act (H.R. 6), which aims to accelerate the discovery, development and delivery of life-saving and life-improving therapies.

Jul 08, 2015

We would like to thank all EPP patients and family members who have been able to bring their stories to federal and local TV and print media.

Jul 02, 2015

We would like to thank our member, Victor Mejias, and his fishing club The Bent Rods Bass Club for the upcoming fundraising tournament. Bent Rods Bass Club strongly believes in giving back and in the Karma of helping others, so each year they pick a new Charity to support.

The APF was able to secure another show on EPP. Don't miss the ABC Nightline Episode tonight featuring the Fulkerson family and Dr. Robert Desnick.

 

Watch the segment now:

Jul 01, 2015

Today we would like to tell you about the upcoming undertaking from the Cook family. As you may know, the Cook brothers, Cason and Caul, have EPP and have set a great example about enhancing awareness of the disease in their local area. They have been hosting a Hat Day for many years in their home town of Vernon, TX.

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.

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