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May 14, 2012
HOLD TIGHT!.......HANG IN THERE ALL EPP TRIAL VOLUNTEERS!
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May 07, 2012
"The Doctors" French Television Show Seeking Patient With Porphyria....
"The Doctors" television show in France has asked the APF to help them find a patient with porphyria. Someone with porphyria to explain the daily lives of people living with this rare disease.
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May 02, 2012
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Apr 27, 2012
For Porphyria Awareness......
WATCH ROB SAUPE ON A TV FEATURE
&
READ ABOUT DESIREE ON iTRIAGE
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Apr 26, 2012
Switzerland Approves SCENESSE® Reimbursement
Clinuvel Pharmaceuticals Limited today announced that SCENESSE® (afamelanotide 16mg implant) has been accepted by two leading health insurers in Switzerland for full reimbursement for the prophylactic treatment of patients with erythropoietic protoporphyria (EPP).
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Apr 23, 2012
Here is your first listen to the Audio News Release (ANR) that will air nationwide next week during National Porphyria Awareness Week!
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Apr 22, 2012
To listen to the Audio News Release click on the link below and open the zip file. An MP3 file will be available for listening.
Porphyria_Awareness_Week_ANR.zip
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Apr 20, 2012
Tammy Roberts uses her talent to send out the message of Porphyria Awareness Week. Efforts big and small heighten porphyria awareness. We need you!
Phtography for Awareness..............
Joanna Floyd uses her photographic talent to promote awareness.
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Apr 18, 2012
HAT DAY
TO BE HELD IN FOUR SCHOOLS FOR PORPHYRIA AWARENESS WEEK!
