Izmir Biomedicine and Genome Center (IBG, www.ibg.edu.tr) is a recently established (2014) advanced biomedical research and innovation centre with modern, state-of-the-art infrastructure and facilities, which are exceptional in Turkey in regard to quality, size and their unique composition. Furthermore, IBG is one of four national Centres of Excellence and the only one in the biomedical field, making IBG the prime address for biomedical research in Turkey. IBG houses totally 30 basic and transnational research program, technological research program, industrial R&D program working on biomedicine and genome sciences. This multidisciplinary, cooperative nature is seen as a strong asset to address complex scientific questions. 

IBG has already taken significant steps, nationally and internationally, towards research and innovation excellence in rare diseases. IBG’s Biobanking Core Facility has a dedicated focus on rare diseases. Furthermore, IBG established a wide network of relevant stakeholders, and is the national node for several international rare disease research consortia (e.g. CONSEQUITUR, ICGNMD) with partners from over a dozen countries (e.g. Broad Inst., Cambridge U., CNAG-CRG, MIT, Newcastle U., Ottawa U.). One major research focus of IBG is rare diseases, which are defined in Europe as diseases that afflict less than 1 in 2000 people. Approximately 6000 rare diseases together afflict 350-400 million people worldwide, more than 30 million in Europe, and cause a major burden to human wellbeing and health systems. Rare diseases, particularly autosomal recessive inherited ones, are approximately twice as prevalent in Turkey than in other ERA countries, and it is estimated that 6-7 million people in Turkey suffer from rare diseases.

IBG’s ERA Chairs project RareBoost will greatly facilitate the development of IBG’s rare diseases focus towards an international level of excellence in research and innovation. Within this project, IBG plans to spearhead and coordinate a national rare disease registry and repository including curated data and patient material (biobank).