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HemaFAIR

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Fostering F.A.I.R. Data and Standards in Rare Hematological Diseases

Research on rare diseases (RDs) is scarce and fragmented in the EU, leading to delayed diagnoses, limited availability of medicinal products and challenging access to care. Like in most RDs, data-driven research on rare haematolog... ver más

30/06/2027

THE CYPRUS FOUNDAT...

1M€

Presupuesto del proyecto: 1M€

Líder del proyecto

KYPRIAKO IDRYMA EREVNON GIA TI MYIKI DISTROFI... No se ha especificado una descripción o un objeto social para esta compañía.

TRL 4-5

Fecha límite participación Sin fecha límite de participación.

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Financiación concedida El organismo HORIZON EUROPE notifico la concesión del proyecto el día 2024-05-21

HORIZON-WIDERA-2023-ACCESS-02-01: Twinning Bottom-Up ExpectedOutcome:For the first time this Twinning call adopts a partially directional approach allowi...

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5 Participantes

THE CYPRUS FOUNDATION FOR MU...

625.63K€ | Lider

Leiden University Medical Ce...

212.50K€ | Participante

STICHTING AMSTERDAM UMC

218.75K€ | Participante

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Duración del proyecto: 37 meses Fecha Inicio: 2024-05-21
Fecha Fin: 2027-06-30

Líder del proyecto

KYPRIAKO IDRYMA EREVNON GIA TI MYIKI DISTROFI... No se ha especificado una descripción o un objeto social para esta compañía.

TRL 4-5

Presupuesto del proyecto 1M€

Fecha límite de participación Sin fecha límite de participación.

Descripción del proyecto Research on rare diseases (RDs) is scarce and fragmented in the EU, leading to delayed diagnoses, limited availability of medicinal products and challenging access to care. Like in most RDs, data-driven research on rare haematological diseases (RHDs) is affected by the lack of data standardisation and the fragmentation of available data in close repositories. Adhering to the principle of making data findable, accessible, interoperable and reusable (FAIR) is pivotal in fostering collaborative research and maximising the potential of available data. FAIR principles are especially relevant in the context of RD research, as their use can help to tackle data fragmentation and accelerate scientific discoveries. 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 RHD research. As a reference centre for most RDs in Cyprus, the Cyprus Institute of Neurology & Genetics (CING) can serve as a model for raising the scientific profile and competitiveness of Cyprus in RDs/RHDs and biomedical informatics and strengthening the research management and administrative skills. HemaFAIR brings together key experts in RHD research, biomedical informatics, patient-centred research and ethics and regulatory issues. HemaFAIR will develop and implement a comprehensive training programme and numerous capacity-building and strategic networking activities, including summer schools, workshops, webinars, and transferrable skills lectures. Also, HemaFAIR will raise the profile of early-career researchers via the development of a mentoring programme, short-term staff exchanges and three collaborative research projects. 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.

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