• Tuesday, October 8, 2019

The American Porphyria Foundation is thrilled to announce that the Food and Drug Administration has granted APPROVAL for Afamelanotide (Scenesse) for the treatment of Erythropoietic Protoporphyria!

At long last, US patients will have access to this life-altering treatment. This approval is the first step in gaining access to Scenesse in the US. Availability to patients will take time as Clinuvel Pharmaceuticals Ltd. turns their focus from gaining FDA approval to delivery of treatment, including location and reimbursement processes. The APF will update you frequently on this progress.

?Congratulations to YOU, our patient community, who fought for this approval for years! Our hard work characterizing the true burden of this disease and the need for treatment finally worked.