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Aug 20, 2014


Below you will find a list of current studies with short summaries. Our next E-news will cover the second portion of the ongoing studies.


7201: Longitudinal Study of the Porphyrias          

Aug 13, 2014

The APF will be hosting patient meetings during AASLD (Boston) and ASH (San Francisco) conventions. The Boston patient meeting will take place around November 8; the San Francisco meeting is planned on December 6.

Jul 30, 2014

Jul 23, 2014

Jul 16, 2014

University of Texas Medical Branch in Galveston, TX is recruiting patients with acute porphyria attacks.

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.

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