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)
APF Members making a difference.
We want to send a big thank you to our longtime APF member and longstanding volunteer, Amy Chapman….
MONICA'S PORPHYRIA AWARENESS WEEK EVENT
We are excited about all of the activities our members are planning for the soon approaching Porphyria Awareness Week, April 14-20 2013. APF member, Monica Fleegel, is hosting a very creative campaign to heighten porphyria awareness and raise funds for the APF to train future experts via the Protect the Future program. The attendees will also be writing letters to the FDA in support of the approval of ne
FDA Letters From People with EPP
EPP friends and family members of EPP people please get your pen and paper out and write a letter to the FDA. The reason is that we need to assure them that people with EPP are in grave need of a treatment.
Alberta Rare Blood Disorders Education Day
Saturday, March 9th, 2013. 8:00am - 4:30pm Alberta, Canada
Member Stories
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