Members & Followers

Monday, January 30, 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 with Erythropoietic Protoporphyria
• Hydroxychloroquine (HCQ) vs. Phlebotomy for Porphyria Cutanea Tarda
• EPP: Natural History, Genotype-Phenotype Correlations, and Psychosocial Impact
• A Pilot Study of Biomarkers Predicting Clinical Expression of Acute Porphyrias
• Transplantation in EPP: A Review
• Longitudinal Study of the Porphyrias
Research patients are needed for these and other reseach projects...Just go to the Porphyria Registy on the top line of the APF website and follow the prompts. www.porphyriafoundation.com 

Desiree Lyon Howe
American Porphyria Foundation
4900 Woodway Dr. Ste 780
Houston , TX 77024
www.porphyriafoundation.com
1-866-APF-3635

Monday, January 23, 2012

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!
www.amazon.com
We 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...

Tuesday, January 17, 2012

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 disease to and maybe they need to be tested.
Another way is by supporting the American Porphyria Foundation with your yearly contributions to continue all the hard work that the APF does for us and Doctors.  Do you know what some of the things are that they do for us?  They make many phone calls, get Dr. Packets together, ER Kits out, take so many phone calls from us daily, coordinate meetings with Doctors, hold events all over the US.  They help other Porphyria Foundations all around the world, they print brochures, paperwork, Disability and so much more we don’t even see.
You can contribute in a financial way also.  We know times are tough for all people and families.  Costs are rising in all directions, but if you can think and then act we can get these new Doctors rolling to help us.  Take a minute to call the American Porphyria Foundation tell them your personal story about Porphyria and how you can contribute to the Physician Education Program.

Tuesday, January 10, 2012

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.3635.
and
REMINDER TO JOIN THE NATIONAL PORPHYRIA REGISTRY

Remember to join the National Registry on the APF website and follow the instructions on the Registry section on the top of the home page or go to

http://rarediseasesnetwork.epi.usf.edu/porphyrias/

There you will find informatjon about the Porphyrias Consortium, which is a team of porphyria experts /researchers who aim to expand knowledge about the porphyrias. The Porphyrias Consortium enables a large scale collaborative effort to develop new strategies and methods for diagnosis, treatment, and prevention of illness and disability resulting from the porphyrias

The Porphyria Consortium is conducting a Longitudinal Study on all porphyrias and they need YOU. After joining , one of the research coordinators will contact you to discuss the research project.

All that is needed is your blood and some of your health records, which is not much on your effort to join in the group of other patients willing to devote a little time for such an important research project.
rarediseasesnetwork.epi.usf.edu