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Showing posts from September, 2019


The APF asked our Facebook friends for their top questions they would ask a porphyria expert.
 The following questions were submitted to Dr. Wang for his responses ... Q. Does EPP give us bad teeth? Also, do people with EPP get stomach pains or is that with the other porphyias? A. The porphyrin that accumulates in EPP patients is protoporphyrin IX, which does not cause discoloration to teeth or abdominal pain.
 The type of porphyria that leads to discolored teeth is Congenital Erythropoietic Protoporphyria. The porphyrias that lead to episodic abdominal pain attacks are the acute hepatic porphyrias. Q. I have EPP and I have a severe reaction on my hands and lips. Do I seek urgent care? Also, what can you even do when you burn your lips? A. The acute reactions to sunlight in EPP can be very severe and, unfortunately, there are not many effective options to treat the symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as ibup…


RESEARCH. IF NOT YOU, THEN WHO? If you have ever asked a question about your type of porphyria only to have a physician respond with “I don’t know,” you are a candidate to participate in research. The American Porphyria Foundation is actively recruiting research volunteers for all types of porphyria. We are calling on our patient members to boost the number of volunteers that participate in these studies. The government grants that fund rare disease research, through the National Institutes of Health, support a limited number of disease groups like porphyria. A critical area for assessment to fund a rare disease group is the number of participants. If there is not proof of steady growth in the number of research volunteers, we risk losing critical funding that supports our Porphyria Centers across the US. To secure ongoing funding, we urge you to participate. It is easier than you may think! We understand that it is an important and personal decision, but if not you ...then who???   I…

Porphyria Post

DR BRUCE WANG SELECTED AS WINNER OF “BEST PRESENTATION” AT ICPP Dr. Bruce Wang, Porphyria Expert at UCSF and American Porphyria Foundation Protect the Future physician, has won Best Presentation at ICPP for his excellent work titled “Single Cell Transcriptomic Analysis of Hepatocytes in a Mouse Model of Porphyria Cutanea Tarda” in collaboration with B. Patkar, D. Burhan, and J. Phillips.  118 abstracts from 27 countries were submitted for presentations and posters.  Congratulations Dr. Wang!
INTERNATIONAL CONGRESS OF PORPHYRINS AND PORPHYRIAS (ICPP) With over 500 attendees from 59 countries, the ICPP meeting held in Milan, Italy, September 8-11, was a global success. The congress began with a Patient Day, where patient advocacy groups collaborated on our work and participated in lectures. The scientific program was three days of presentations from scientists, researchers and clinicians. The APF will share detailed information and key learnings from the Congress over the next several we…



 Christina Verkest I am a 27-year-old from the suburbs of Detroit. I was diagnosed with EPP when I was about 5 or 6 at Children’s Hospital in Downtown Detroit. Since I have dealt with my EPP for the majority of my life, I am very comfortable with it, and even when I don’t feel as “fashionable” in the summer sun, I know how to own it and am happy to educate others about why I might be wearing long pants and sleeves in the middle of a sweltering July day. So I try to this bring this “own it, even the not-so-great stuff” attitude into my high school Spanish classroom, as almost all of them can relate in some way. I always spend time at the start of the school year ensuring that my classroom environment is one that allows students to feel comfortable, accepted and supported. So one of the “ice breakers” I like doing is the infamous “2 truths and 1 lie,” where I share with my students two truths about my life and one lie. They have to guess which of the three is my l…

Welcome to the AFP!

Welcome to the AFP!Thursday, August 29, 2019 Please share in a warm welcome to Iany Schneider, our new Administrative Assistant at the APF.  Iany comes with non-profit experience in the healthcare realm – along with a positive, contagious attitude! You can reach Iany at  She waiting for your call. 1.866.APF.3635

Medical Moment: Pain Awareness Month

Medical Moment: Pain Awareness Month
The U.S. Pain Foundation has designated September as Pain Awareness Month. The APF will be sharing pain stories, featured articles, and information related to pain in the porphyrias, whether it is the neurovisceral pain of the acute porphyrias or the burning pain of the cutaneous porphyrias. In fact, two APF members will be featured on the US Pain Foundation website as their videos were selected among the top 30 nationwide (thank you Candace Johnson and Claire Richmond!)
Take a moment to read the attached article: “Patient Perspectives on Acute Intermittent Porphyria with Frequent Attacks: A Disease with Intermittent and Chronic Manifestations.” According to this study, “Pain was usually the first symptom cited by patients with AIP when asked to define porphyria or describe their experience of the disease. It was the most common and distressing symptom experienced by patients, both during attacks and chronically.”
Also of interest, The Department of H…


Update from CLINUVEL on US FDA REVIEW PROCESS SCENESSE®Thursday, August 22, 2019 Ongoing interactions between the US Food and Drug Administration (FDA) and CLINUVEL’s scientific teams continue to take place as the final outcome date of October 6, 2019 approaches. This date has alreayd been extended from May 31st to October 6th. In the latter half of the scientific review, the FDA will attempt to address substantive review issues which have not yet been covered by its committee members. At this stage, the FDA will use its time to gain a broader insight of risks and benefits while reserving the right to identify new review issues that may trigger an extension of the Prescription Drug User Fee Act (PDUFA) goal date. There is no indication that the current PDUFA date cannot be met; it is CLINUVEL’s expectation that October 6th will remain the current PDUFA goal date for an outcome to be provided. Read Clinuvel's August Newsletter at…

Raising our Porphyria Voices at the FDA!

Raising our Porphyria Voices at the FDA!Thursday, August 29, 2019 The Food and Drug Administration (FDA) hosted the American Porphyria Foundation on Monday, August 26th for a Rare Disease Listening Session.  Patient Listening Sessions are a way for the FDA to engage with patients or their advocates and they are one avenue for a patient community to share their experience with a disease or condition by talking directly with FDA staff. The objective of the meeting with the APF was to identify porphyria as eight distinct diseases that fall in two main categories (acute and cutaneous), to share patient perspectives on living with different types of porphyria and to convey our desperate need for treatment for all our members. Dr. Amy Dickey gave an overview of the porphyrias to set the stage for the patient talks. We were proud to have seven patients share their experiences living with Porphyria. Thank you to Jason Barrett, Jennifer Beck, Amy Chapman, Gudron Debes, Amy Dickey, Desiree Lyo…