A new Massive Open Online Course (MOOC) on Health Data Ethics & Regulatory Frameworks in Rare Disease Research has been launched today! Developed as part of the European Joint Programme on Rare Diseases, in collaboration with the Rare Diseases Foundation, this...
The Foundation has recently started a new 4-year project, starting on January 1, 2024, funded under the Horizon Europe Framework Programme, titled ERAMET. Its kick-off meeting was held in Namur, Belgium, on March 5-6. The project aims to enhance decision-making and...
The article “Learning from conect4children: A Collaborative Approach towards Standardisation of Disease-Specific Paediatric Research Data” has been published in the journal MDPI on April 8, 2024. This work originated as part of the conect4children project, in which...
Fondazione Gianni Benzi developed informative material on cancer and prevention within the project “Tumore, ma non timore”
A 3-day training course on “Training on strategies to foster solutions of undiagnosed rare disease cases” is being organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP RD partners. The training will be held in Rome, Italy on 13-15 March 2023.
The French Foundation for Rare Diseases has announced the opening of a new facilitation window of the Massive Open Online Course – MOOC From Lab to Clinic: Translational Research for Rare Diseases on October 9th
The Foundation announces the launch of a new four-year project, starting today, funded by the Cost programme, entitled HELIOS. The project aims to build a network of excellence to integrate, harmonise and disseminate existing knowledge on haemoglobinopathies,...
The PHD Summer School 2023 – Active and Healthy Ageing, Well Being and Smart Living: challenges and enabling technology will be held on 19-22 September 2023 in Ancona, Italy.
The conect4children (c4c) Consortium today announced the establishment of the conect4children Stichting, a Dutch non-profit organisation, aiming to sustain the work done by the public-private consortium.
Fondazione Gianni Benzi, together with CVBF and ECRIN published the article “PedCRIN tool for the biosamples management in paediatric clinical trials”
Recent posts in HELIOS, HEMAFAIR, Updates from projects