Publication brief: Association of Afamelanotide With Improved Outcomes in Patients With Erythropoietic Protoporphyria in Clinical Practice

The Erasmus Medical Center (EMC) in Rotterdam is the only trained and accredited European Erythropoietic Protoporphyria (EPP) Expert Centre in the Netherlands, and commenced treating EPP patients with afamelanotide after the product’s launch in 2016.1 In this paper (see here), published in JAMA Dermatology earlier in 2020, the EMC team outlines their clinical experience with afamelanotide in EPP.


1 SCENESSE® (afamelanotide 16mg) is approved in the European Union as an orphan medicinal product for the prevention of phototoxicity in adult patients with erythropoietic protoporphyria (EPP). SCENESSE® is approved in the USA to increase “pain- free” light exposure in adult EPP patients with a history of phototoxicity. Information on the product, including the Summary of Product Characteristics can be found on CLINUVEL’s website at


  1. Let’s hope more and more countries in the EU will report their amazing experiences with Scenesse w.r.t. EPP. I’m proud of the CUV team who managed to get it approved in every single country. Hope many other countries will follow.

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