APF Reminders!

The American Porphyria Foundation will be hosting a Patient Education meeting tomorrow Wednesday, May 10, 2017 in Santa Rosa Beach, FL. See the invite below.

 jpeg INVITE3


Call the APF TODAY to RSVP! We are looking forward to seeing you there. Please utilize parking on High Street.


The Mighty

The APF has partnered with the Mighty to focus on those living with serious health conditions. The Mighty publishes real stories about real people facing real challenges. They are dedicated to helping people with porphyria in their lives.

See Shawn Willis' story here: https://themighty.com/2017/04/erythropoietic-protoporphyria-wetsuit-hat/



 ** Free WARNING WALLET CARD** This conveniently sized card fits in your wallet and can be easily identified by Emergency Technicians.  It contains the APF website URL, the Safe and Unsafe Drug List URL, and an identifier stating WARNING, THE PATIENT HAS AN ACUTE PORPHYRIA. This simple but bright colored card could save your life.  Also having a MedicAlert bracelet is also very important to your health.  If you do not have a wallet card, contact the APF immediately and ask for the card to be sent to you.




Send your letters to the APF TODAY!

In 2008, a group of patients accompanied Desiree to tell FDA about the many advantages about Scenesse (Afamelanotide).  It has been more than 6 years and they are still dragging their feet, for no reason.  Many of you want to reach out to Dr. Marcus for an update since we have heard nothing from our October meeting.  Some of you want updates and others are demanding that the Scenesse (Afamelanotide) treatment be approved immediately.  Whatever your goals are please write Dr. Marcus immediately.  Send your letters to the APF TODAY!

Dr. Kendall Marcus

Director, Division of Dermatology and Dental Products
Food and Drug Administration

10903 New Hampshire Avenue
White Oak Campus, WO 22/Rm. 5202
Silver Spring, MD 20993


American Porphyria Foundation
4900 Woodway Drive, Suite 780
Houston, Texas 77056


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