University of Texas Medical Branch in Galveston, TX is recruiting patients with acute porphyria attacks.
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Jul 16, 2014
Jul 11, 2014
The APF is sending out letters to all physicians from our data base about the Longitudinal Study of the Porphyrias. We also provide information about the CME (Continuing Medical Education) course (a free, internet-based activity). The title of the course reads: "The Management of Acute Porphyrias: Improving Diagnosis, Treatment, and Standards of Care".
Jun 26, 2014
Below are the components of the comprehensive doctor's packet we send out to your physicians:
Jun 18, 2014
Jun 13, 2014
May 30, 2014
Dear EPP patients,
The APF will have three conference calls with you:
1st Call (General EPP care): 4.00 PM CDT on Sunday, June 1st.
2nd Call for EPP participants in the CUV030 Afamelanotide/ SCENESSE clinical trial: 7.00 PM CDT on Thursday, June 5th.
May 29, 2014
Krista Zodet, President
Apr 25, 2014
Apr 18, 2014
National Porphyria Awareness Week is just around the corner, April 20-26! We continue to share the stories and events of our members who are enthusiastically promoting Porphyria Awareness in their communities.
Mar 29, 2014
Physician Dr. Lisa Kehrberg who suffers from Acute Intermittent Porphyria shares her personal experience with AIP in this video.