General News
Implant Helps Those With Skin Diseases, and Gives Them a Tan Too
Robert Saupe visiting Texas in 2009. Because of his condition, his skin must be covered up from head to to, even in temperatures well above 90 degrees, as they were during this trip. (Courtesy of Robert Saupe)
HR2674 Bill Almost Defeated!!
BULLETIN............
WE HAVE THE HR2674 BILL ALMOST DEFEATED!
HOORAY FOR OUR MEMBERS!
Don't Forget to Join the National Porphyria Registry
DON'T FORGET........
JOIN THE NATIONAL PORPHYRIA REGISTRY
Just go to the top line on the home page of the APF website
SSA To Expand Compassionate Allowances List in 2012
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.
New FUNdraising Opportunity For You!
Many of you have asked how you can help raise money for the APF and now we have a fun and interactive way for you to participate in our fundraising efforts! We have created an online resource for you to help raise money for the American Porphyria Foundation.
Reminder
Register on the National Porphyria Registry (click on the porphyria registry section on the top bar) it is for future research. We will begin scheduling our three committees soon; patient advisory, government affairs, and media.
Member Stories
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