Prof. Ivaylo Tarnev to Head the Commission for Rare Diseases at the Ministry of Health

The Head of the Clinic of Neurology at Alexandrovska University Hospital, Prof. Ivaylo Tarnev, is the new Chairman of the Commission for Rare Diseases at the Ministry of Health. This was announced by the medical institution.

The change was made by order of the Minister of Health on May 5, with Prof. Tarnev taking over the post from Prof. Rumen Stefanov, Dean of the Faculty of Public Health at the Medical University – Plovdiv.

The Commission plays a key role in supporting health authorities by preparing opinions on the inclusion of conditions in the list of rare diseases in Bulgaria, proposing the designation of expert centers and reference networks, and evaluating the activities of the National Register of Patients with Rare Diseases and specialized centers.

Prof. Tarnev is the founder and head of the first Expert Center for Genetic Neurological and Metabolic Diseases at Alexandrovska University Hospital, established in 2016. He is a member of the boards of two European Reference Networks – EURO-NMD (for rare neuromuscular diseases) and MetabERN (for hereditary metabolic diseases).

Until now, Prof. Tarnev was a member of the Commission for Rare Diseases at the Ministry of Health and Chairman of the Commission for the Treatment of Rare Diseases at Alexandrovska University Hospital. He is among the experts who participated in the development of two national programs in this field.

His team has made a significant contribution to the introduction of innovative RNA and DNA therapies in Bulgaria for the treatment of rare diseases, including spinal muscular atrophy, Duchenne muscular dystrophy, hereditary transthyretin amyloidosis, Niemann-Pick disease, and Friedreich’s ataxia.