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Jasmin Barman-Aksözen, PhD

Patient Advocate
International Porphyria Patient Network (IPPN)

Jasmin Barman-Aksözen is a patient with the ultra-rare inborn error of metabolism erythropoietic protoporphyria (EPP). She studied molecular biology and biochemistry at the University of Heidelberg and obtained her PhD and Venia Legendi from the University of Zurich. Her research topics cover basic science and drug development in EPP and related diseases (porphyrias), as well as aspects concerning the regulatory assessment and benefit evaluation of orphan drugs. During her PhD, she was involved in the development of the first drug for treating EPP and later became a patient representative for the respective approval proceedings at the European Medicines Agency. To promote access to therapy for all patients with EPP and other porphyrias, she co-founded the International Porphyria Patient Network (IPPN), a group of dedicated patient advocates with a professional background in science, medicine, and other relevant expertise. She is working at the Institute for Laboratory Medicine at the Municipal Hospital in Zurich (Swiss Reference Center for Porphyrias) and the University of Zurich. In addition, she is studying health economics and methods of health technology assessment at the Zurich University of Applied Sciences.

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