News

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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.

May 29, 2014

 

 Krista Zoset, President Healthwell Foundation

Krista Zodet, President
HealthWell Foundation

 

Apr 25, 2014

Dear APF Members,
 
We hope you will consider being a part of seven ongoing research studies. Now is the time to join the many other people who are helping porphyria researchers in finding new treatments leading to a cure.

Apr 18, 2014

Dear Members,

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.

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