Click on the bold blue text below or on a topic listed on the left side of the page to read more.
Feb 06, 2012
Clinuvel SCENESSE® Announcement........
The following is a company announcement concerning SCENESSE®, the treatment being studied in the US for EPP. If you are interested in volunteering to participate in further studies with SCENESSE®, please contact the APF: 1 866 APF 3635.
_____________
Click on the bold blue text below or on a topic listed on the left side of the page to read more.
Feb 01, 2012
Click on the bold blue text below or on a topic listed on the left side of the page to read more.
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.
Click on the bold blue text below or on a topic listed on the left side of the page to read more.
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.
Click on the bold blue text below or on a topic listed on the left side of the page to read more.
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!
Click on the bold blue text below or on a topic listed on the left side of the page to read more.
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.
Click on the bold blue text below or on a topic listed on the left side of the page to read more.
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.
Click on the bold blue text below or on a topic listed on the left side of the page to read more.
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.
