ERDERA Project National Mirror Group (NMG) Brings Together Rare Disease Experts and Public Stakeholders in Türkiye
As part of the EU-funded European Rare Diseases Research Alliance (ERDERA) project, the Türkiye National Mirror Group (NMG) convened a significant meeting with participation from experts working in the field of rare diseases, public authorities, academia, funding bodies, clinical research centers, and patient advocacy representatives.
With the goal of establishing National Mirror Groups across 37 partner countries, the initiative aims to enhance interaction among stakeholders, strengthen national R&D activities, and foster strong synergy to support the generation of new knowledge.
The Türkiye National Mirror Group, led by the Izmir Biomedicine and Genome Center (IBG), brings together a broad and diverse stakeholder community. On 13 November, the group held its 4th and first in-person meeting at IBG. During the well-attended event, participants discussed priority topics within five main working groups established to enhance collaboration, strengthen capacity, improve data sharing, contribute to policy processes, and expand regional/international networks. Comprehensive discussions were also held on screening programs, robust data systems, and early diagnosis mechanisms.
Speaking at the meeting, Prof. Dr. Uğur Özbek noted: “Our national action plan is a crucial guide that highlights our path forward and successfully identifies Türkiye’s needs. The participation of the Directorate of Rare Disease Department here today is a significant opportunity.”
Bringing together leaders from academia, public institutions, civil society, and clinical practice, the meeting aimed to support the implementation of the existing National Rare Diseases Action Plan, strengthen national data systems, and enhance coordination among stakeholders.
The group will continue its work by defining its short- and long-term goals and will make significant contributions to both the national and international rare disease ecosystem.
