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:
communication(at)ern-reconnet.eu
New Sjogren’s Syndrome Disease Coordinator
Congratulations to Prof. Chiara Baldini from AOUP for being elected as our new Disease Coordinator for Sjogren’s Syndrome! Prof. Baldini has been working in Sjögren’s syndrome (SS) research since 1999. The focus of her research was initially SS clinical phenotyping; during her PhD thesis, she investigated the salivary proteomic biomarkers in SS and later she had…...
EURORDIS Awards 2024 Volunteer Award is our ePAG Silvia Aguilera
ERN ReCONNET is proud and happy to annouce that our ePAG Advocate, Silvia Aguilera, has been awarded of the EURORDIS 2024 Volunteer Award. Congratulations from the entire Network! At ERN ReCONNET, Silvia is the ePAG Advocate representing the Antiphospolid Syndrome (APS) and she is also the Chair of the Young ERN ReCONNET Working Group together…...
Universal Health Coverage Day
Universal Health Coverage Day on December 12th is the annual rallying point for the growing movement for health for all. It marks the anniversary of the United Nations’ historic and unanimous endorsement of universal health coverage in 2012. On Universal Health Coverage (UHC) Day 2023, global partners and communities are marking the campaign under the…...
Artificial intelligence act: Council and Parliament strike a deal on the first rules for AI in the world
Following 3-day ‘marathon’ talks, the Council presidency and the European Parliament’s negotiators have reached a provisional agreement on the proposal on harmonised rules on artificial intelligence (AI), the so-called artificial intelligence act. The draft regulation aims to ensure that AI systems placed on the European market and used in the EU are safe and respect fundamental rights and EU values.…...
Public Meeting on Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement
On December 14th, 2023, the FDA in collaboration with the Duke-Robert J. Margolis, MD Center for Health Policy (Duke-Margolis) will host a virtual public meeting titled “Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement.” The purpose of this public meeting is to highlight and build upon existing actionable approaches for engaging patients,…...
Position paper: Together4RD position statement on collaboration between European reference networks and industry
ERN ReCONNET is glad to share this interesting position paper focused to analyze several aspects associated with rare diseases system such as research and innovation, drug discovery and development, policy, and the role of the ERNs in tackiling the current obstacles. In particular, collaborations between the ERNs and industries are addressed by looking at ERNs…...
communication(at)ern-reconnet.eu
New Sjogren’s Syndrome Disease Coordinator
Congratulations to Prof. Chiara Baldini from AOUP for being elected as our new Disease Coordinator for Sjogren’s Syndrome! Prof. Baldini has been working in Sjögren’s syndrome (SS) research since 1999. The focus of her research was initially SS clinical phenotyping; during her PhD thesis, she investigated the salivary proteomic biomarkers in SS and later she had…...
EURORDIS Awards 2024 Volunteer Award is our ePAG Silvia Aguilera
ERN ReCONNET is proud and happy to annouce that our ePAG Advocate, Silvia Aguilera, has been awarded of the EURORDIS 2024 Volunteer Award. Congratulations from the entire Network! At ERN ReCONNET, Silvia is the ePAG Advocate representing the Antiphospolid Syndrome (APS) and she is also the Chair of the Young ERN ReCONNET Working Group together…...
Universal Health Coverage Day
Universal Health Coverage Day on December 12th is the annual rallying point for the growing movement for health for all. It marks the anniversary of the United Nations’ historic and unanimous endorsement of universal health coverage in 2012. On Universal Health Coverage (UHC) Day 2023, global partners and communities are marking the campaign under the…...
Artificial intelligence act: Council and Parliament strike a deal on the first rules for AI in the world
Following 3-day ‘marathon’ talks, the Council presidency and the European Parliament’s negotiators have reached a provisional agreement on the proposal on harmonised rules on artificial intelligence (AI), the so-called artificial intelligence act. The draft regulation aims to ensure that AI systems placed on the European market and used in the EU are safe and respect fundamental rights and EU values.…...
Public Meeting on Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement
On December 14th, 2023, the FDA in collaboration with the Duke-Robert J. Margolis, MD Center for Health Policy (Duke-Margolis) will host a virtual public meeting titled “Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement.” The purpose of this public meeting is to highlight and build upon existing actionable approaches for engaging patients,…...
Position paper: Together4RD position statement on collaboration between European reference networks and industry
ERN ReCONNET is glad to share this interesting position paper focused to analyze several aspects associated with rare diseases system such as research and innovation, drug discovery and development, policy, and the role of the ERNs in tackiling the current obstacles. In particular, collaborations between the ERNs and industries are addressed by looking at ERNs…...
