Tetiana Kulesha was elected to the EURORDIS Board of Directors in 2024.
She is the founder and Chairman of the Board of the NGO “Rare Diseases of Ukraine” and co-founder of the “Orphanni Synytsi” foundation. She has been involved in public activism for over 15 years. Currently, she is working on the implementation of the Concept of Development of the Healthcare System for Patients with Rare (Orphan) Diseases for 2021-2026 approved by the Ukrainian government, which includes the introduction of expanded neonatal screening, the creation of a network of reference centers, and the integration of Orphanet into the Ukrainian eHealth system. As a mother of a child with a rare disease, she is sincerely convinced that an incurable illness does not cancel life. Her daily work is aims at doing everything in her power to ensure that the needs of patients with rare diseases are prioritised, and that patients themselves have access to effective treatment and a full life.
Email: kuleshatatiana@ukr.net