News

National Porphyria Awareness Week will take place from April 17 through April 24, 2010. Raising awareness means reminding more doctors of the diagnosis and its tell-tale signs; educating friends and family members about the symptoms and treatment for different types of porphyria; and raising funds for porphyria research and education.

Now you can support porphyria research when you do your holiday shopping, or buy anything else you need from Amazon.com. The following vendors have generously agreed to give money to the APF for every purchase you make with them.

Now that swine flu vaccinations have begun in some areas, members with acute porphyria (AIP, VP, HCP & ADP) will be relieved to know that it is fine for them to receive flu and other vaccines.

The Kakkis EveryLife Foundation has moved the deadline for its Rare Diseases art contest to allow for more entries.  The new deadline for submissions is Thursday, December 31 (the original deadline was October 30).

The purpose of the contest is "To empower artists affected by Rare Diseases to express their unique struggle with a rare disease."

APF member Judy Phelps, who suffers from acute porphyria, was interviewed extensively by Dr. Lisa Sanders for the Diagnosis column that appears in the Sunday New York Times magazine section. Dr. Sanders writes in each column about about a different case in which a patient's symptoms puzzled and often alarmed doctors. Naturally, all of the porphyrias make a perfect fit for this type of feature.

The APF needs volunteers to help staff the porphyria exhibit booth at the American Society of Hematology meeting in New Orleans, December 5-8.

If you have a couple of days to spare and live in or near New Orleans, LA, you can educate doctors about diagnosis and treatment, and disseminate information about continuing medical education on porphyria, specialty consults, and expert porphyria labs in the United States.  Staffing a booth gives you a chance to help doctors provide better treatment for their porphyria patients.

A family dealing with Erythropoietic Protoporphyria (EPP) will appear on Thursday October 8, on Dr. Mehmet Oz's TV show. Check local listings for times. The Leppert family has been wrestling with EPP for nearly 20 years, and they are warm and sympathetic advocates for those with the disease.

The Continuing Medical Education (CME) course Recommendations for the Diagnosis and Treatment of the Acute Porphyrias is available for physicians at http://www.acuteporphyrias.net/  This newly reaccredited course is based on the Annals of Internal Medicine article of the same title (Ann Intern Med, 2005;142:439-450) by Karl E. Anderson, MD; Joseph R. Bloomer, MD; Herbert L. Bonkovsky, MD; James P. Kushner, MD; Claus A. Pierach, MD; Neville R. Pimstone, MD; and Robert J.

Can you spare a day to help the APF raise physician awareness about the porphyrias, their accurate diagnosis  and treatment?

 

If so, please volunteer with us:  come and staff our exhibit booth at the American Association for the Study of Liver Diseases meeting in Boston, MA, October 31 through November 3.

EPP specialists Micheline Mathews-Roth, MD and Joseph Bloomer, MD will discuss Erythropoietic Protoporphyria (EPP) in a national conference call with APF members. Dr. Roth will discuss the disease, its symptoms and current treatment, and Dr. Bloomer will discuss upcoming research on potential new treatment and take your questions. A very special opportunity for EPP patients and their families! Call us toll-free at 1-866-APF-3635 to RSVP and receive call-in instructions.