News

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

Jan 20, 2016

We are looking for patients volunteers to join The Longitudinal Study of the Porphyrias. Participation in this study is very easy. It does not require you to travel to the research site. The study involves a review of your medical records, completing comprehensive questionnaires about your symptoms and quality of life, and providing blood and urine samples.

Jan 13, 2016

You are invited to a patient educational meeting in Houston, TX.

* Presentations by World Renowned Porphyria Experts.

* Meeting with the APF's Executive Director Desiree Lyon

* Opportunity to Participate in a Q & A Session.

Jan 07, 2016

Dear EPP friends,

We have gathered and FedEx'ed more than 300 letters with your experiences to the FDA. We also will start a Twitter campaign soon.

Dec 24, 2015

It has been our pleasure to provide you and your families with the most up to date porphyria information available and to offer support for your needs.  We also have enjoyed meeting so many of you over the past thirty years and have been blessed by the lasting friendships we have cultivated.  We look forward to meeting many more of you and serving you in the future.

Dec 16, 2015

Dear EPP Family,

As you all know, we are collecting EPP patient experiences in letter-form so that we can take them collectively to the FDA to ask them for the accelerated approval of the drug Afamelanotide. To date we have collected 214 patient letters with a few more on the way.

Dec 14, 2015

Nov 18, 2015

 

The APF and our FDA Committee will be leading a FULL SPEED AHEAD charge to gain FDA accelerated approval of Afamelanotide/SCENESSE, the new treatment for EPP.

Nov 12, 2015

The Genetic Science Learning Center

We invite you to check out the learning resources about the genetic science.

Nov 04, 2015

We would like to let you know that the two satellite clinics in Seattle, WA and Miami, FL are now accepting Longitudinal Study patients for research. Another research center in Cleveland, OH will be ready to accept patients soon. 

Oct 23, 2015

The following article and the video are taken from News Channel 5 network:

NEW YORK. (Ivanhoe Newswire) - For most of us, sunlight is essential for good health. It provides a dose of vitamin D, it's been shown to improve mood, and may even lower blood pressure.

Oct 15, 2015

The APF will be exhibiting at the 57th American Hematology Society meeting in Orlando, Fl. The convention is held from December 5 to 8. We would like to ask you to help us man the exhibit booth.

Oct 14, 2015

The APF will be exhibiting at the 57th American Hematology Society meeting in Orlando, Fl. The convention is held from December 5 to 8. We would like to ask you to help us man the exhibit booth.

Oct 07, 2015

The attached document discusses the latest news from FDA and Clinuvel:

Type C meeting provides guidance for follow up and further discussions between FDA and Clinuvel.

Sep 30, 2015

Your APF Membership

We are currently working on the next issue of the 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.

Sep 21, 2015

Clinuvel Pharmaceuticals Limited (ASX: CUV; ADR:CLVLY; XETRA:DAX) announces today that the European Medicines Agency’s (EMA’s) Pharmacovigilance and Risk Committee (PRAC) has agreed to a Post Authorisation Safety Study (PASS) protocol, allowing SCENESSE® (afamelanotide 16mg) to be released for the commercial supply to adult patients diagnosed with erythropoietic pro

Aug 31, 2015

We would like to thank our long-term member, Shawn Willis, for organizing and hosting the terrific fundraising awareness event!

Aug 24, 2015

The Barrel Race in Vernon, TX

Aug 12, 2015

Hello dear members, we have an open letter from Dr. Peter Tishler to share with you.

To: Individuals with Acute Porphyrias, who are Members of American Porphyria Foundation

Subject: Communication to us the benefits of your medications

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.

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