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Showing posts from January, 2012

Here are some exciting things going on at the APF and how you can be Involved!

PORPHYRIA RESEARCH The following are some of the research projects of the APF Research Coonsortium. The following porphyria researchers direct the projects: Dr. Karl Anderson, University of Texas Medical Branch, Galveston, TX, Dr. Robert Desnick, Mount Sinai School of Medicine, NYC, NY, Dr. Joseph Bloomer, University of Alabama, Birmingham, AL, Dr. Montgomery Bissell, University of California, San Francisco, CA, Dr. Herbert Bonkovsky, Carolinas Healthcare Systems, Charlotte, NC, and John Phillips, Ph.D, University of Utah, Salt Lake City, UT.
• Mitoferrin-1 Expression in Patients with Erythropoietic Protoporphyria (EPP)
• A double-blind, randomized, placebo-controlled, parallel group trial on the efficacy and safety of Panhematin in the treatment of acute attacks of porphyria
• Clinical Diagnosis of Hereditary Coproporphyria (HCP)
• Quantification of the Effects of Isoniazid Treatment on Erythrocyte and Plasma Protoporphyrin IX Concentration and Plasma Aminolevulinic Acid in Patients w…

Read Alyson's New Book with EPP.

This link has been approved by the APF.
Congratulations to Alyson Bullock Porter for getting Her book published and it's now available on Amazon.com.
Alyson talks about how she lives her life with EPP. Very Inspirational!
Great job Alyson!Life Is What Happens When You Have Other Planswww.amazon.comWe all make plans in our lives and hope that those plans go accordingly. . . . I know from personal experience that my life never goes the way that I expect it to. It never has. Because of that I am very grateful. Even though sometimes I don't understand why "life" happens the way it does, I am l...

How to SUPPORT THE APF!

This year the American Porphyria Foundation for 2012 is focusing on supporting the Physician Education Program.  We have many fine Specialty Doctors that are approaching Retirement.  We appreciate all of their hard work and time that they have devoted to their patients and the APF.  But when they retire who will replace them?  How will they be trained properly?  Many wonder will we have support having such a rare disease.  Will we have a cure for all types of Porphyria?These questions are so important to each one of us.  That is why we as the patients need to come together to support the new Doctors and the American Porphyria Foundation.  How can we do this you may ask?One way is by talking to your Doctor to raise awareness of the disease that you have.  What problems you face and how you need a willing Doctor to take the time to listen to you and help you.Secondly, tell your family and friends that you need their support to learn this disease and even show them they may have this dis…

SSA INFO FOR DISABILITY Please read over!

OUTSTANDING OPPORTUNITY TO LET YOUR THOUGHTS BE KNOW TO THE SOCIAL SECURITY SENIOR OFFICIALS
Desiree Lyon has been invited to participate in a teleconference with officials of the Social Security Administration (SSA) on Thursday, January 19. The topic will be: "Overview of SSA's Disability Programs." She will hear a presentation and then participate in a questions and answers session.

Desiree requests that you send the APF your questions and concern regarding the Social Security Disability. Also, if you applied for disability and were turned down, please tell us about your experience . This is a rare opportunity to have our problems known directly to SSA officials and have our questions answered immediately . We will be soliciting their suggestions, as well.

To make this opportunity more fruitful, your input is very important. Please email your comments and questions or experiences to the Desiree at porphyrus@aol.com or call the APF office at our toll free number 866.APF.…