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
European Health Data Space
The European Health Data Space (EHDS) will be a key pillar of the strong European Health Union. and is the first common EU data space in a specific area to emerge from the European strategy for data. In spring 2024, the European Parliament and the Council reached a political agreement on the Commission proposal for the EHDS. The…...
Share4Rare webinar on the 2024 research project call
Share4Rare will host a webinar (in English) Thursday, May 9th at 4:00 pm on the 2024 research project call. Share4Rare aims to enhance research on rare diseases through collaborative knowledge generation. The platform provides researchers with a secure infrastructure to conduct their investigations, accompanied by a team of professionals trained to provide personalised support and facilitate the research process. In connection of patient-driven research,…...
12th European Conference on Rare Diseases and Orphan Products
ERN ReCONNET is proud to announce to be an ECRD 2024 Associated Partner! The ECRD is the largest, patient-led, rare disease policy-shaping event held in Europe. The event is coming up soon, don't forget to do your registration. By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives,…...
ERICA Webinar: c4c trials, education and training
This webinar is organized by ERICA in collaboration with conect4children, EJP RD, and ERN BOND and it is scheduled for April 11th at 13:00 CEST. The webinar will be introduced by Prof. Mark Turner, the CEO of the non-profit. Chloe Bickerstaff, service lead will outline services for site identification, site level feasibility, and support during trials using case studies and metrics. Education and…...
Share4Rare: Medical books
Share4Rare is a project aimed at making a difference in rare diseases, where the entire community gathered by patients, carers, clinicians, and researchers, join forces. Share4Rare is funded by a Horizon2020 grant from the European Commission. The project is divided into work packages aligned with its strategic objectives. The Share4Rare's collection of medical books is…...
ERN ReCONNET Transition of Care Task Force
ERN ReCONNET is the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (rCTDs) is dedicated to improving rCTDs patient care across Europe. As part of its initiatives, ERN ReCONNET is also working on improving transitional care for European patients living with rCTDs. Transitional care, also known as transition, refers to a…...
ern.reconnet(at)ao-pisa.toscana.it
European Health Data Space
The European Health Data Space (EHDS) will be a key pillar of the strong European Health Union. and is the first common EU data space in a specific area to emerge from the European strategy for data. In spring 2024, the European Parliament and the Council reached a political agreement on the Commission proposal for the EHDS. The…...
Share4Rare webinar on the 2024 research project call
Share4Rare will host a webinar (in English) Thursday, May 9th at 4:00 pm on the 2024 research project call. Share4Rare aims to enhance research on rare diseases through collaborative knowledge generation. The platform provides researchers with a secure infrastructure to conduct their investigations, accompanied by a team of professionals trained to provide personalised support and facilitate the research process. In connection of patient-driven research,…...
12th European Conference on Rare Diseases and Orphan Products
ERN ReCONNET is proud to announce to be an ECRD 2024 Associated Partner! The ECRD is the largest, patient-led, rare disease policy-shaping event held in Europe. The event is coming up soon, don't forget to do your registration. By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives,…...
ERICA Webinar: c4c trials, education and training
This webinar is organized by ERICA in collaboration with conect4children, EJP RD, and ERN BOND and it is scheduled for April 11th at 13:00 CEST. The webinar will be introduced by Prof. Mark Turner, the CEO of the non-profit. Chloe Bickerstaff, service lead will outline services for site identification, site level feasibility, and support during trials using case studies and metrics. Education and…...
Share4Rare: Medical books
Share4Rare is a project aimed at making a difference in rare diseases, where the entire community gathered by patients, carers, clinicians, and researchers, join forces. Share4Rare is funded by a Horizon2020 grant from the European Commission. The project is divided into work packages aligned with its strategic objectives. The Share4Rare's collection of medical books is…...
ERN ReCONNET Transition of Care Task Force
ERN ReCONNET is the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (rCTDs) is dedicated to improving rCTDs patient care across Europe. As part of its initiatives, ERN ReCONNET is also working on improving transitional care for European patients living with rCTDs. Transitional care, also known as transition, refers to a…...
