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Flière TETECOU - The "Mots de têtes" podcast
On the occasion of its 3rd 'Research and Innovation' Day, this Friday, March 11, the Filière de Santé Maladies Rares des malformations de la tête, du...
International Summer School 2022: Rare Disease Registries and FAIRification of Data
As part of the training activities proposed by EJP RD, the International Summer School on Rare Disease Registries and FAIRification of Data is...
Training for patient representatives and advocates on leadership and communication skills
As part of the training activities proposed by EJP RD, an international course entitled "Training for patient representatives and advocates on...
FAIRopoly
The FAIRopoly has been launched on the EJP RD website. FAIRopoly illustrates the FAIRification steps followed by the ERNs registries to make their...
IRDiRC video
On the occasion of Rare Disease Day 2022 (February 28th), the International Rare Diseases Research Consortium (IRDiRC) has released an introductory...
Research and Innovation" Day of the TETECOU Rare Diseases Health Network
The next Research and Innovation Day of the Filière de Santé Maladies Rares des malformations de la tête, du cou et des dents (TETECOU)...
ALS and motor neuron diseases: what avenues for tomorrow?
The symposium "ALS & Motor Neurone Diseases: what avenues for the future?" organized by france biotech will take place on March 17, 2010.
The European Joint Programme on Rare Diseases in now on Instagram
To commemorate Rare Disease Day (February 28th), the European Joint Programme on Rare Diseases (EJP RD) is proud to announce the launch of their...
Podcast "Rare Diseases" from the IRCEM Corporate Foundation
Our director Daniel Scherman was honored to contribute to the "Family Health Focus" podcast series from our loyal partner the Foundation...
Joint AAP with ARAMISE on multisystematic atrophy
The Association for Research on Multisystematic Atrophy (Aramise) and the Foundation for Rare Diseases (FMR) have agreed on a partnership...
Digital Tools for Rare Disease project (DT4RD)
After many months of work, we are pleased to announce the launch of the "Digital tools 4 Rare Diseases (DT4RD)" project. A product of...
BPAN science popularization article
The association of the Doctoral students and Doctors of Biology of Bordeaux (2D2B) and the platform of digital health Sci-dip allied themselves to publish a...