Press Release
New HORIZON Europe Project HemaFAIR: Fostering F.A.I.R. Data and Standards in Rare Hematological Diseases
The Cyprus Institute of Neurology & Genetics (CING) proudly announces the start of a new project named HemaFAIR. This 36-month project is funded with €1,499,976.25 under the European Commission’s Horizon Europe Twinning Bottom-Up program.
HemaFAIR, led by CING’s Molecular Genetics Thalassemia Department (MGTD, head: Carsten W Lederer), is conducted in collaboration with four European centers: Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus (Italy), Vall d’Hebron University Hospital (Spain), Amsterdam University Medical Center, and Leiden University Medical Center (Netherlands).
The project aims to enhance the innovation potential of Cyprus and promote scientific excellence through a European network. Bringing together top experts in rare hematological diseases (RHDs), biomedical informatics, ethics and regulatory issues, and patient-centered research, HemaFAIR implements FAIR (Findable, Accessible, Interoperable, Reusable) principles to improve research and data in rare hematological diseases. As a reference center for most rare diseases in Cyprus, CING seeks to elevate the scientific profile and competitiveness of Cyprus, while also strengthening research management and administration.
Under the leadership and coordination of Dr Petros Kountouris, Scientist of MGTD at CING, HemaFAIR will develop and implement a comprehensive training program and numerous capacity-building and strategic networking activities, including summer schools, workshops, webinars, and transferrable skills lectures. The activities of HemaFAIR will be specifically targeted to early-career researchers, project managers and administrative staff in Cyprus. Furthermore, HemaFAIR will raise the profile of early-career researchers via the development of a mentoring program, short-term staff exchanges and collaborative research projects. Notably, HemaFAIR will demonstrate the FAIRification process on two existing platforms for hemoglobinopathies, a group of RHDs that are particularly prevalent in Cyprus, thus maximizing the impact of the project on the local society. The ultimate aim is to promote multi-center, data-driven research in RHDs, while disseminating the training activities to the scientific community, patient advocacy groups, policymakers, and the public in Cyprus.
The HemaFAIR project commenced on July 1st, 2024, with the kick-off meeting held on July 11th–12th, 2024. During this meeting, partners discussed the project’s objectives, milestones and planned activities through presentations and discussion sessions. HemaFAIR has begun its initiatives to achieve the goals of this collaborative effort on the implementation of FAIR principles in data management.
Date of the press release: 18 July 2024