Full Name
Ms Tetiana Kulesha
Job Title
Chairman of the board
Company/Organisation
NGO "Rare Diseases of Ukraine"
Speaker Bio
Tatiana was born and lives in Kyiv. From 1989 to 1994 she studied at the Kyiv Pedagogical
Institute and from 1996-1998 at the Institute for Professional Upgrading of Teachers. Since May
2006 she has been the Executive Director of the All-Ukrainian NGO “Association of Disabled
People with MPS”. She has a personal connection with this disease. Specifically, her son, Dmytro
Kulesha, is a patient who suffers from MPS type 6. As the Board Chairman of the NGO “Rare
Diseases of Ukraine”, she is the organizer and a regular speaker in all the events, which Rare
Diseases holds, as well as being an advocate for the rights of Rare Diseases patients at the
government level.
Tetiana Kulesha