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Showing posts from December, 2015

Healthwell Foundation Offers Financial Assistance To Acute Porphyria Patients

Healthwell Foundation Offers Financial Assistance To Acute Porphyria Patients
Krista Zodet, President
HealthWell Foundation
We are pleased to join forces with the American Porphyria Foundation to increase porphyria awareness and spread the word about resources available through the HealthWell Foundation for people living with porphyria. Since 2006, the HealthWell Foundation has provided copayment and premium assistance to eligible acute porphyria patients. Through our fully-automated grants process, patients are able to determine eligibility and apply online.  Patients also have the option to contact our hotline at 800-675-8416 to speak directly with a HealthWell representative. The HealthWell Foundation is an independent, 501(c)(3) charitable organization that provides financial assistance to insured individuals who struggle with high out-of-pocket medical expenses. You can learn more about the HealthWell Foundation by visiting us at

Tracy Yelen ~ Research Experience with AIP

Tracy Yelen ~ Research Experience Type of Porphyria:  Acute Intermittent Porphyria (AIP) "If you're at all interested in what they are doing to me in this Panhematin trial, I am happy to share. During the entire stay, the medical team accessed my port.  They drew all the blood they wanted without all the usual IV sticks, which is nice. Every morning after breakfast we did the infusions, which may or may not be a placebo.  Neither the nurses nor I were allowed to see what was pumping into me.  So I am blindfolded and there are sheets hung in the room to cover the medicine and tinfoil around the lines. It takes only a couple hours to complete.  I snoozed and chatted with the sweet nurse.  Outside of that, the dextrose fluids are flowing in through my port 24/7. Otherwise, it was pretty uneventful.  Why do I tell you this?  Basically, I want to remind you of how important it is to volunteer as a research patient if you ever get the opportunity. There are lots of trials that even…

We wish you a Merry Christmas, Happy Holidays and a Happy, Healthy New Year!

We wish you a Merry Christmas, Happy Holidays and a Happy, Healthy New Year! 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. Please contact us if we can help in any way 713.266.9617! Your friends at the American Porphyria Foundation.

"Remember....Research is the key to your cure!"

Who is the Scientific Advisory Board made up of?

Scientific Advisory Board  Who is the Scientific Advisory Board made up of?  Please read the profiles of the Doctors.  Please get involved in Research so you can meet An APF expert or a PTF DR.  
Karl E. Anderson, MD, Chairman (profile)
University of Texas Medical Branch D. Montgomery Bissell, MD (profile)
University of California Joseph R. Bloomer, MD
University of Alabama Herbert L. Bonkovsky, MD (profile)
Wake Forest Baptist Medical Center Winston-Salem, North Carolina Sylvia S. Bottomley, MD
University of Oklahoma Robert J. Desnick, PhD, MD (profile)
Mount Sinai School of Medicine John H. Epstein, MD (profile)
University of California Richard Galbraith, MD, PhD
University of Vermont Micheline M. Mathews-Roth, MD (profile)
Harvard University School of Medicine Claus A. Pierach, MD
University of Minnesota Neville Pimstone, MD, PhD
University of California Maureen B. Poh-Fitzpatrick, MD
University of Tennessee Steven Shedlofsky, MD (profile)
University of Kentucky Peter V. Tishler, MD (profile)

EPP Patient Letter Writing Campaign Update

EPP Patient Letter Writing Campaign Update
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. Please take a minute to write a letter today. You can scan or/and send it to us by replying to this email. You can also fax it to us at 713.840.9552. Today is the very last chance to make a difference! Your contributions to previous letter campaigns worked.  They convinced the FDA to approve Phase III of the drug trials in the USA, and our American letters helped convince the European Medicines Agency to grant approval of the drug in the European Union.  Now it is our turn to seek approval for Afamelanotide by the FDA in the USA! If you have any questions, please reach out to the APF 713.266.9617.  Let's make this happen.  Patient advocacy works. THANK YOU FOR PARTIC…

Patient Education Meeting in Orlando Florida a huge success

Patient Education Meeting in Orlando Florida a huge success

The Patient Educational Meeting that we held last weekend in Orlando Florida in conjunction with the ASH convention, was a huge success. We had a great turn out there was standing room only! A special thank you to Dr’s Phillips, Parker and Silver, and the Recordati Company for coming to the meeting. The questions asked by the members were excellent, showing that the more you ask and the more you learn then the better equipped you are to care for yourself! We would like to thank the doctors who presented at the meeting as well as our long-term APF member Amy Chapman for helping us to organize it. Also, special thanks to everyone who attend with their families and friends. Watch the APF E-news for the announcements about the upcoming meetings. Make sure your membership is up to date, so you receive all news.
Please get involved and take action now and sign up for research so that we can learn more and ultimately find a cure!  

An update of clinical management of acute intermittent porphyria

An update of clinical management of acute intermittent porphyriaElena Pischik1,2 and Raili Kauppinen1 Author information ►Copyright and License information ► Abstract Acute intermittent porphyria (AIP) is due to a deficiency of the third enzyme, the hydroxymethylbilane synthase, in heme biosynthesis. It manifests with occasional neuropsychiatric crises associated with overproduction of porphyrin precursors, aminolevulinic acid and porphobilinogen. The clinical criteria of an acute attack include the paroxysmal nature and various combinations of symptoms, such as abdominal pain, autonomic dysfunction, hyponatremia, muscle weakness, or mental symptoms, in the absence of other obvious causes. Intensive abdominal pain without peritoneal signs, acute peripheral neuropathy, and encephalopathy usually with seizures or psychosis are the key symptoms indicating possible acute porphyria. More than fivefold elevation of urinary porphobilinogen excretion together with typical symptoms of an…