Türkiye National Mirror Group (NMG) Held Its First Meeting Under the ERDERA Work Package 23
Under the leadership of Prof. Dr. Uğur Özbek from the Izmir Biomedicine and Genome Center (IBG), the first meeting of NMG Türkiye was held on March 27, 2025. This meeting marked an important step for the rare disease research ecosystem in Türkiye aligning with the goals of Work Package 23 of the ERDERA partnership.
Work Package-23 aims to establish National Mirror Groups (NMGs) in 36 ERDERA partner countries, bringing together expert organizations in rare disease research to identify national needs, assess current challenges and also create a synergy between NMG’s and share good practices.
NMG Türkiye brings together a wide and multi-stakeholder structure operating in the field of rare diseases. Participants include:
- Representatives from public institutions (Ministry of Health and Social Security Board of Türkiye),
- Research institutes (Istanbul University, Hacettepe University, Erciyes University, Gazi University, ACURARE, HÜGEN, İSTÜN, etc.),
- Organizations that fund rare disease research (TÜSEB, TÜBİTAK),
- Clinical researcher associations (e.g., Turkish Society of Hematology, Turkish Society of Medical Genetics),
- Civil society organizations representing patients and families (e.g., Rare Diseases Federation).
More than 30 stakeholders attended the meeting to discuss the pressing needs and ongoing challenges in rare disease research in Türkiye. During the meeting, Clément Moreau, one of the leaders of Work Package 23, met with NMG Türkiye representatives and gave a brief presentation about the ERDERA project.
Additionally, Gülnur Gökmen from the Rare Diseases Federation shared the outcomes and key discussion points of the “Rare Diseases Panel in the Year of the Family,” held on February 27 in Ankara.
