Julkowska briefed journalists in September 2021: Rare Diseases: A Global Challenge.

Daria Julkowska has over 15 years of experience in research and management. She is the Scientific Coordinator of the European Joint Programme on Rare Diseases that brings together different types of stakeholders (researchers, funders, clinicians & patients) from 35 countries from Europe and beyond, and also is responsible for the coordination of the IRDiRC Scientific Secretariat. This position allows her to implement the strategic rare disease research and funding recommendations of IRDiRC to the development of EJP RD, which includes the participation of the European Research networks.

Julkowska is involved in the rare diseases field since 2010, starting from E-Rare, the ERA-Net for Research programs on rare diseases, where for the first two years she occupied the position of the project manager to finally (April 2013-December 2018) take over the coordination of the program. As the coordinator, she developed and put into action a set of collaborations facilitating rare diseases research, including partnerships with European Research Infrastructures and Patients’ Organizations. She has extensive knowledge and understanding of European funding schemes and programs.

Julkowska obtained her international Ph.D. in molecular biology at the University of Paris XI, France and the University of Gdansk, Poland in 2005. She pursued her scientific vocation by the post-doctoral experience in cellular biology, at Institut Pasteur, Paris and extensive training in communication and European Union counseling. She also holds MSc in Management of Research from the University of Paris Dauphine. In 2020, she received the EURORDIS Back Pearls European Rare Diseases Leadership Award.