Svetlana Karimova, the President of the National Association of Patients with Rare Diseases Genetika, one of the largest umbrella patient organizations in Russia.
Bachelor of Sociology, Master of Public Health Administration and Management, graduate of the St. Petersburg State University of Economics majoring in Finance of Innovative Medicine. Founder and director of The Information Centre for Rare Diseases and Medicines for Orphans in Russia. Member of the Council for National Alliances of the International Association EURORDIS. Co-founder and Secretary General of the Eurasian Alliance for Rare Diseases. Member of the National Medical Chamber. Co-founder and board member of The National Council of Experts on Rare Diseases. Member of the Expert Council of the State Duma on Rare (orphan) diseases. Host of the TV show Vnimanie k Detalyam of the Internet channel MEDIAMETRICS. Director General of Centre for Innovative and Integration Programs and Technologies LLC.