Being a molecular biologist with a PhD degree in my own genetic condition has already helped me to understand many aspects of the ultra-rare disease, erythropoietic protoporphyria (EPP). Moreover, having contributed to the development of the first safe and effective treatment for EPP, and having even tested it myself, made me a suitable candidate for patient representation during the approval proceedings for "afamelanotide" at the European Medicines Agency (EMA).