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Feb 01, 2012
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Jan 24, 2012
BULLETIN............
WE HAVE THE HR2674 BILL ALMOST DEFEATED!
HOORAY FOR OUR MEMBERS!
DON'T FORGET........
JOIN THE NATIONAL PORPHYRIA REGISTRY
Just go to the top line on the home page of the APF website
Important Notice........
SSA to Expand Compassionate Allowances List in 2012
The Social Security Administration (SSA) has notified the APF that it hopes to expand its Compassionate Allowances list in 2012.
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Nov 01, 2011
Dear Friends,
The APF is working on an effort to ensure access to life-saving porphyria medications and ...........We need your help!
Over the past several months, we have heard that some of our members may have experienced problems obtaining needed medical treatment in the hospital inpatient setting, and we are concerned that this may be limiting patients' access to Panhematin®, a crucial but costly medication that is the only approved drug for the treatment and prevention of acute porphyric attacks.
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Oct 28, 2011
The American Porphyria Foundation is hosting a special Conference Call with Porphyria Expert Dr. Peter Tishler. This is your opportunity to ask the questions you have wanted answers to!
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Oct 26, 2011
The American Porphyria Foundation (APF) will be attending the American Society of Hematology (ASH) Convention again this year in San Diego, December 10-13, 2011. This is an important meeting for the APF because it provides us with the opportunity to educate many doctors about porphyria and share some of your own experiences with the disease.
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Oct 24, 2011
Has your doctor received their American Porphyria Foundation Physician's Information Packet? If not, send us your doctor's contact information and the APF will send your doctor a very large and comprehensive packet on the diagnosis and treatment of the Acute Porphyrias.
If you have a different type of Porphyria, we will send your doctor a packet for your specific type of Porphyria so be sure to tell us what kind of Porphyria you have along with your name and contact information.
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Oct 19, 2011
If you have not seen the APF DVD, Porphyria LIVE, you can order one today and get one free for your doctor or another family member.
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Oct 18, 2011
Do you have Porphyria? Do you feel like your friends and families don't understand your disease? Well, you are not alone. We want to hear your story and share it with other patients who experience the same challenges you do.
Because Porphyria is so rare, many newly diagnosed patients have never even heard of the condition before, let alone met someone else who suffers from it. The same is true for members of the general public, and this lack of understanding in others can make life much more difficult for people living with Porphyria.
