Anna Kole

  • Public Health Policy Advisor - Rare2030 Project Lead

Anna_Kole

Anna Kole is a public health professional with more than a decade of experience in the field of rare
diseases, both in the US and Europe. She first joined the EURORDIS team in 2009 to publish The Voice
of 12,000 Patients.

Anna currently leads the Rare 2030 project, a 2-year foresight study using a participatory approach to
propose policy recommendations in the field of rare diseases for the upcoming decades.

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.

In her spare time, Anna organizes charity clothing sales to raise money for rare disease patient
organisations.

She 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.

Telephone: +33 6 14 93 36 00
Email: anna.kole@eurordis.org

 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases