12 National Rare Disease Day Conference
Event Date: 27 February 2026 • 09:00 do: 27 February 2026 • 15:30

CTGCT at the 12th National Rare Disease Day Conference

On Friday, February 27, 2026, part of our team joined experts, decision-makers, and patient advocates at the 12th National Rare Disease Day Conference held at the Congress Center Brdo pri Kranju.

The event, organized by the Ministry of Health in cooperation with the Association for Rare Diseases of Slovenia, Association of patients with blood diseases and the Section for Rare Diseases at ZOPS. served as a vital pulse-check for the rare disease landscape in Slovenia.

Key Highlights

The atmosphere at Brdo pri Kranju was one of focused optimism. As an institution dedicated to advanced therapies, several sessions particularly resonated with our core objectives:

  • The “Urbagen” Milestone: We followed the presentation by Dr. Špela Miroševič and Prof. Dr. Damjan Osredkar on the development of the first Slovenian drug for a rare disease. The approval of the Urbagen clinical study is a beacon of hope and a testament to the fact that Slovenia is becoming a serious player in the global biotech arena.
  • Financing the Future: The roundtable on financing rare disease medicines highlighted the systemic challenges we face. Ensuring that advanced therapies (like those we develop) are accessible and sustainable within the compulsory health insurance framework is a conversation we are deeply committed to.
  • Patient-Centric Networking: We had the opportunity to hear Dr. Tanja Zdolšek Draksler from the Section for Rare Diseases at ZOPS  talk about GeneH, a project in which we are a partner, and underscoring the importance of the “patient-first” approach.

Whatsapp Image 2026 02 27 At 09.55.39 (3)The conference emphasized that “integration” is the way forward. Whether it is the National Contact Point for Rare Diseases or cross-border healthcare initiatives, no single entity can solve the puzzle of rare diseases alone.

At the conference we also had an opportunity to meet some of our partners at the GeneH project. We left the conference inspired by the progress made and determined to continue contributing our expertise in gene and cell therapy to this vibrant community.