ERN ReCONNET
Events & Media
Past and future meetings, conferences, congresses.
News
News from relevant stakeholders on health and rare diseases. Take a look at it and start to engage with the initiatives enlisted here.
If you have a news that you would like us to share, please send us an email to:
ern.reconnet(at)ao-pisa.toscana.it
B1MG project draws to a close
The Beyond 1 Million Genomes project (B1MG) has been a €4M three-year Coordination and Support Action to support the design and testing phase of the European 1+Million Genomes (1+MG) initiative. This initiative facilitates signatory countries to realise a practice of personalised medicine and health, based upon a shared ‘framework’ and the infrastructure to safely access…...
XpanDH Webinar: The Risks for Europe Without a European Health Data Space
XpanDH will host its fourth webinar titled ‘Unlocking the Potential: The European Health Data Space and the Digital Future of European Healthcare‘ on Thursday 16 November 2023, 14:00 - 15:00 CET . In September 2020 the announcement of a new legislative proposal for a European Health Data Space (EHDS) was made by European Commission President Ursula von der…...
ERNs: A flagship EU action for patients with rare diseases
In the European Union (EU) alone, up to 36 million people are living with one of the over 6,000 distinct rare diseases. Each rare disease, however, has a low prevalence. The definition of a rare disease in the EU is one that affects fewer than 1 person out of 2,000. Currently, there is no known…...
Free online course. “MOOC From Lab to Clinic: Translational Research for Rare Diseases”
The French Foundation for Rare Diseases has announced the opening of a new facilitation window of the MOOC From Lab to Clinic: Translational Research for Rare Diseases on October 9th. This update will be available until December 2nd 2023. In this course, you'll get to learn from experts about how medicines are developed, tested in clinical trials, approved by regulators, and…...
ORPHANET latest resources
Orphanet has developed and produced several important resources for the rare disease ecosystem. Here is a list of the latest news: ORPHAcodes. Rare disease-specific coding systems are key for data collection and analysis, ORPHAcodes recognise more than 6,000 RD - implementing them fulfills patient needs, aids monitoring, and more. Read about the current state of ORPHAcode…...
IRDiRC Drug Repurposing Guidebook
The International Rare Diseases Research Consortium (IRDiRC) has developed a new guidebook to invigorate drug repurposing for rare diseases. Drug repurposing has often been suggested as a critical solution for developing more therapies for rare diseases. However, repurposing approaches for rare diseases has not been as impactful as anticipated. With the aim of addressing the challenges…...
ern.reconnet(at)ao-pisa.toscana.it
B1MG project draws to a close
The Beyond 1 Million Genomes project (B1MG) has been a €4M three-year Coordination and Support Action to support the design and testing phase of the European 1+Million Genomes (1+MG) initiative. This initiative facilitates signatory countries to realise a practice of personalised medicine and health, based upon a shared ‘framework’ and the infrastructure to safely access…...
XpanDH Webinar: The Risks for Europe Without a European Health Data Space
XpanDH will host its fourth webinar titled ‘Unlocking the Potential: The European Health Data Space and the Digital Future of European Healthcare‘ on Thursday 16 November 2023, 14:00 - 15:00 CET . In September 2020 the announcement of a new legislative proposal for a European Health Data Space (EHDS) was made by European Commission President Ursula von der…...
ERNs: A flagship EU action for patients with rare diseases
In the European Union (EU) alone, up to 36 million people are living with one of the over 6,000 distinct rare diseases. Each rare disease, however, has a low prevalence. The definition of a rare disease in the EU is one that affects fewer than 1 person out of 2,000. Currently, there is no known…...
Free online course. “MOOC From Lab to Clinic: Translational Research for Rare Diseases”
The French Foundation for Rare Diseases has announced the opening of a new facilitation window of the MOOC From Lab to Clinic: Translational Research for Rare Diseases on October 9th. This update will be available until December 2nd 2023. In this course, you'll get to learn from experts about how medicines are developed, tested in clinical trials, approved by regulators, and…...
ORPHANET latest resources
Orphanet has developed and produced several important resources for the rare disease ecosystem. Here is a list of the latest news: ORPHAcodes. Rare disease-specific coding systems are key for data collection and analysis, ORPHAcodes recognise more than 6,000 RD - implementing them fulfills patient needs, aids monitoring, and more. Read about the current state of ORPHAcode…...
IRDiRC Drug Repurposing Guidebook
The International Rare Diseases Research Consortium (IRDiRC) has developed a new guidebook to invigorate drug repurposing for rare diseases. Drug repurposing has often been suggested as a critical solution for developing more therapies for rare diseases. However, repurposing approaches for rare diseases has not been as impactful as anticipated. With the aim of addressing the challenges…...
