Public Health Policy Director – Rare2030 Project Lead, EURORDIS-Rare Diseases Europe


Anna Kole is a public health professional by training and has been working with EURORDIS for 13 years, where she now is the Public Health Policy Director. 

 Anna Kole led the Rare 2030 project, a 2-year foresight study using a participatory approach that proposed policy recommendations for a new framework for rare diseases policies in Europe covering topics such as diagnosis, care, treatments, data, research, and national and European infrastructures. She is now the lead for the Rare 2030 Action Campaign advocating for a European Action Plan in rare diseases to ensure that the recommendations of Rare 2030 are implemented in EURORDSIS’ strategy. 

 She previously managed EURORDIS’ participation in projects and networks focused on patient registries, biobanks, clinical bioinformatics, and –omics in an effort to empower patients and their representatives as active participants in the research process including, RD-Connect, the International Rare Disease Research Consortium and the TREAT NMD Neuromuscular Network. During her tenures with Orphanet and the National Organization for Rare Disorders (NORD), Anna was responsible for a range of activities in the field: policymaking and analysis, patient education and registries. 

 Anna holds a Master’s degree in Maternal and Child Health from the UNC Gillings School of Global Public Health. A Polish and American national, she speaks English, French and Polish. 


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