Skip to main content

New News from the APF!

NEW at the APF

APF Pain Program

The APF has indicated a new Pain Project to help educate physicians on the extreme pain that many porphyria patients endure.   Because some states have instituted stringent pain prescription policies, the APF has felt it necessary to focus on this issue as part of our physician education program.  
We need your input.  Please call or email the APF with your experiences -- good or bad.   Please contact or contact Desiree at the APF office            (713) 266-9617       or             866 APF 3635       Toll Free.    
We are developing educational materials that will include the comments of experts around the world, as well as articles related to porphyria pain. 
Protect the Future

Please remember that the APF has an ongoing Protect the Future training program to educate porphyria experts for the future.  As our present experts approach retirement, we look to these young doctors to fill their positions. 
For example, we need your help to provide travel to the different centers to train under different experts, as well as travel to national and international porphyria educational meetings to meet and share information with their colleagues around the world. 
Training experts is a costly endeavor.  Each of us benefit from their training.   Without them, what will we do in the future and what will our physicians do without them.   Porphyria Experts are the doctors who write the medical textbooks and journal articles that your doctors read to learn how to diagnose and treat porphyria.  
Every day doctors reach out to the APF to ask for information from porphyria specialists.   The APF also sends out thousands of physician education packets to your primary care doctors.  In fact, if you want us to send your doctor a comprehensive packet, please contact the APF and give us your physician's name and address and we will send a packet forthwith.
The APF is asking that you make a special donation that goes directly to the Protect the Future program to train the next generation of experts.  Watch the September APF newsletter, which will feature each trainee with their mentors.  We are very proud of this group of young physicians.  Your lives are in their hands.   
EPP Trials Have Begun

The long awaited Phase III EPP Clinical trials using afamelanotide/Scenesse for EPP have begun in seven centers across the country.  The following physicians at these respective centers are the primary investigators for the trials.  Watch the APF eNews and the APF newsletter progress during the trails. 
Dr. Karl Anderson
University of Texas Medical Branch
Galveston, TX
Dr. Montgomery Bissell
University of California
San Fransisco, CA
Dr. Joseph Bloomer
University of Alabama
Birmingham, AL
Dr. Herbert Bonkovsky
Carolinas Healthcare System
Charlotte, NC
Dr. Robert Desnick
Mount Sinai School of Medicine
New York, NY
Dr. Henry Lim
Hwnry Ford Health System
Detroit, MI
Dr. John Phillips
University of Utah
Salt Lake City, UT
The trials will continue for approximately six months.  At the close of the trials, the collected data will be assessed and presented to the FDA.  It is our hope that they will give approval for the afamelanotide/Scenesse treatment timely.   The drug is already available for patients who are Italian citizens.
Once approved, the treatment will become available to patients nationwide. 


Popular posts from this blog


What could it be?
Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…


GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: (Porphyria Association Denmark)Denmark: (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…

Happy Winter Season!

                  Happy Winter Season!