IBG RareBoost Seminar – Prof. Rumen Stefanov “Health Policy for Rare Diseases in Bulgaria”
On March 21st at 11:00 am, Prof. Rumen Stefanov will give a seminar titled “Health Policy for Rare Diseases in Bulgaria” at IBG Aziz Sancar Auditorium.
Prof. Stefanov is a medical doctor and professor in public health at the Medical University of Plovdiv. As the Director of the Institute for Rare Diseases in Bulgaria, he has played a key role in shaping rare disease policy at both national and European levels.
We welcome your participation in Prof. Stefanov’s seminar, where he will provide an in-depth look at Bulgaria’s approach to rare disease policy, including efforts to enhance diagnostics, treatment access, and patient support, while integrating European best practices into the country’s healthcare framework.
Introducing Prof. Rumen Stefanov
Prof. Rumen Stefanov has been a driving force behind several rare disease initiatives in Bulgaria and Eastern Europe, including the establishment of the Information Centre for Rare Diseases and Orphan Drugs (2004), the Eastern European Conferences for Rare Diseases (2005-2011), and the RareDis Medical Center (2009). His work extends beyond Bulgaria, contributing to rare disease strategies in Turkey, Romania, Ukraine, and Russia.
At the national level, he has chaired Bulgaria’s Committee for Rare Diseases at the Ministry of Health and led the working groups responsible for the National Plan for Rare Diseases (2006-2008) and the creation of the national registry and expert centers for rare diseases (2013). He is also actively involved in European and global rare disease networks, including the EU Rare Diseases Task Force, the European Commission Expert Group on Rare Diseases, and the International Rare Diseases Research Consortium (IRDiRC). He also serves as Chair of the International Collaboration on Rare Diseases and Orphan Drugs (ICORD).
Seminar Abstract
Bulgaria has made significant strides in addressing rare diseases through structured policies and international collaboration. The country’s approach focuses on improving diagnostics, treatment, and patient support while integrating European best practices. A major milestone was the 2014 regulation establishing expert centers and a national registry, enabling better disease monitoring and resource allocation. The Rare Diseases Commission (RDC) plays a crucial role in updating the official list of rare diseases, evaluating expert centers, and overseeing patient registries.
With over 35 expert centers across major cities like Sofia, Plovdiv, Varna, and Pleven, Bulgaria has strengthened its healthcare infrastructure for rare disease management.
A key priority remains accelerating access to innovative therapies, improving patient outcomes, and fostering sustainable healthcare solutions. Through national and international efforts, Bulgaria continues to enhance transparency, collaboration, and patient-centered care, aiming to improve the quality of life for Bulgarians affected by rare diseases.