HemaFAIR

HemaFAIR aims to unravel the scientific excellence and innovation potential of a Widening country (Cyprus), through an EU network of excellence on the use of FAIR principles in rare haematological diseases (RHD) research.
Through an international partnership with experts in the field, HemaFAIR aims to raise the scientific profile and competitiveness of The Cyprus Institute of Neurology and Genetics (project coordinator) to improve the position of researchers in Cyprus in the fields of biomedical informatics and rare haematological diseases (RHDs) and strengthening the research management and administrative skills. Notably, the research component of HemaFAIR will demonstrate the FAIRification process on two existing platforms for haemoglobinopathies, a group of RHDs that are particularly prevalent in Cyprus, thus maximising the impact of the project on the local society.
 
ROLE OF THE FOUNDATION
The Foundation is responsible for the regulatory, ethical, legal and social issues of the project, and contributes to the design and implementation of the HemaFAIR training programme.
 
MAIN CONTRIBUTION OF THE FOUNDATION
Deliverable 1.2 - Data management plan
Deliverable 2.1 - Updated Data management plan
Deliverable 7.1 - Training programme description
Deliverable D9.1 – Methodology document for identifying suitable research and funding opportunities in RD/RHD and biomedical informatics, with a pilot list of identified opportunities
Deliverable 11.1 - Set of regulatory and ELSI recommendations for the implementation of the use case
Deliverable 13.1 - FAIRified PROM module on Cyprus Haemoglobinopathy Patient Registry
Milestone 5 - Applicable ethical requirements to be implemented during the processing of personal data identified
Milestone 7 - Design and requirements of use case shared with the Consortium
Milestone 11 - Training material developed in all WPs shared with the WP7
Milestone 12 - Requirements for training on regulatory and ELSI identified through surveys
Milestone 15 - FAIRification of training material
 
FUNDED BY: Horizon Europe–Twinning Bottom-Up, GA 101159589, 2024-27 (www.cordis.europa.eu/project/id/101159589)

DURATION: Jul 2024 - June 2027

PARTNERS:

www.hemafairproject.eu

View all the project updates

Annalisa Landi at the HemaFAIR Federated Learning Hackathon 

HemaFAIR and HELIOS contribute to the EU public consultation on the Action Plan for Women in Research, Innovation and Startups

Gender equality: webinar on the EU framework

Fondazione Gianni Benzi at the 20th ASCAT Conference

FAIR Principles Training School

Annalisa Landi’s lecture on ELSI anda data protection for rare diseases data

19th Annual ASCAT Conference

HemaFAIR: kick-off meeting

45