Periodic Reporting for period 1 - RareBoost (Boosting the Rare Disease research and innovation capacity of the Izmir Biomedicine and Genome Center)
Okres sprawozdawczy: 2020-10-01 do 2022-03-31
Within WP1 ‘Project Management’ standard management actions were carried out to coordinate the project. Furthermore, the management structures were implemented, including the establishment of the Steering Committee and the Project Management Office.
Within WP2 (Recruitment of the ERA Chair holder and set-up of IBG’s Unit for Rare Diseases), the first milestone (hiring of the ERA Chair holder) was achieved. With Dr. Ioannis Ragoussis (McGill University Genome Center, Montreal, Canada), RareBoost has an internationally recognized expert on genomics and next-generation sequencing as its ERA Chair holder. However, the set-up of the Unit for Rare Diseases is delayed as the relocation of the ERA Chair holder to IBG is also delayed.
Within WP6 (Networking, communication and dissemination to stakeholders), RareBoost’s website and social media accounts (Twitter, LinkedIn and Facebook) were established and are maintained. First contacts with the media and other stakeholders were established and information material about RareeBoost and rare diseases was published. In cooperation with national rare disease patient organizations a video about research on rare diseases and a public ‘Rare Diseases Panel’ was organized.
The WP3 (Research capacity building), WP4 (Soft skill capacity building), and WP5 (Smart specialization and innovation) have not formally started as we are awaiting the relocation of the ERA Chair holder Dr. Ragoussis to IBG.
• Full integration of the ERA Chair holder and his team members into IBG’s internal structures.
• Strengthening the research and administrative aspects of RareBoost.
• Increased visibility of IBG via improved relationships with national and international stakeholders.