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
MOOC “Health Data Ethics & Regulatory Frameworks in Rare Disease Research”
The Foundation For Rare Diseases in collaboration with Gianni Benzi Foundation, ERN EpiCARE and Eurordis Rare Diseases Europe, has codeveloped a MOOC (Massive Open Online Course) entitled “Health data ethics & regulatory frameworks in rare disease research”. This course is part of the European Joint Programme for Rare Diseases (EJPRD). The course is now open for registrations and can be accessed through…...
ERN ReCONNET – Endorsed Event: 43rd European Workshop for Rheumatology Research
It is with a great pleasure that ERN ReCONNET presents the 43rd European Workshop for Rheumatology Research (EWRR) that will be held for the first time in Genova, Italy, on May 9-11 2024. ERN ReCONNET has endorsed this important workshop, our Network experts are invited speakers and will be moderators of this event focused on…...
Conferenza Finale del progetto LIMeNar
ERN ReCONNET è official Collaborating Partner del progetto LIMeNar organizzato dall'Istituto Superiore di Sanità (ISS). Nell’ambito del Laboratorio di Health Humanities del Centro Nazionale Malattie Rare, a distanza di 8 anni dalla pubblicazione delle Linee di Indirizzo sulla medicina narrativa, l'ISS sta conducendo insieme alla Società Italiana di Medicina Narrativa (SIMeN) il progetto di ricerca "LIMeNar -…...
ERN ReCONNET would like to congratulate to our ePAG Ilaria Galetti for the European Pulmonary Fibrosis Federation (EU-PFF) Patient Advocacy Champion Award 2024. Ilaria was honored with this important award for her dedication and the impact she has truly made in the lives of those affected by Pulmonary Fibrosis. Congrats from all all of us, we are happy to…...
ERICA Webinar: c4c expert advice, patient and public involvement, data standards
The webinar is organized by c4c and it will be held on May 3rd, 2024 from 1 pm to 2 pm CEST. Speakers will be Mark Turner (c4c), Fenna Mahler (c4c), Pamela Dicks (NHS Scotland Children's Research Network and eYPAGnet), and Becca Leary (University of Newcastle ) The webinar will be introduced by Prof. Mark Turner, the CEO of…...
Undiagnosed Day 2024
ERN ReCONNET joins this international campaign to shed a light on this important matter as 350 million people around the world live with an undiagnosed disease. Research on our human genome (e.g., genome sequencing, exosome, and other techniques) have the pave the way to new strategies and approaches providing answers to some of these patients…...
ern.reconnet(at)ao-pisa.toscana.it
MOOC “Health Data Ethics & Regulatory Frameworks in Rare Disease Research”
The Foundation For Rare Diseases in collaboration with Gianni Benzi Foundation, ERN EpiCARE and Eurordis Rare Diseases Europe, has codeveloped a MOOC (Massive Open Online Course) entitled “Health data ethics & regulatory frameworks in rare disease research”. This course is part of the European Joint Programme for Rare Diseases (EJPRD). The course is now open for registrations and can be accessed through…...
ERN ReCONNET – Endorsed Event: 43rd European Workshop for Rheumatology Research
It is with a great pleasure that ERN ReCONNET presents the 43rd European Workshop for Rheumatology Research (EWRR) that will be held for the first time in Genova, Italy, on May 9-11 2024. ERN ReCONNET has endorsed this important workshop, our Network experts are invited speakers and will be moderators of this event focused on…...
Conferenza Finale del progetto LIMeNar
ERN ReCONNET è official Collaborating Partner del progetto LIMeNar organizzato dall'Istituto Superiore di Sanità (ISS). Nell’ambito del Laboratorio di Health Humanities del Centro Nazionale Malattie Rare, a distanza di 8 anni dalla pubblicazione delle Linee di Indirizzo sulla medicina narrativa, l'ISS sta conducendo insieme alla Società Italiana di Medicina Narrativa (SIMeN) il progetto di ricerca "LIMeNar -…...
ERN ReCONNET would like to congratulate to our ePAG Ilaria Galetti for the European Pulmonary Fibrosis Federation (EU-PFF) Patient Advocacy Champion Award 2024. Ilaria was honored with this important award for her dedication and the impact she has truly made in the lives of those affected by Pulmonary Fibrosis. Congrats from all all of us, we are happy to…...
ERICA Webinar: c4c expert advice, patient and public involvement, data standards
The webinar is organized by c4c and it will be held on May 3rd, 2024 from 1 pm to 2 pm CEST. Speakers will be Mark Turner (c4c), Fenna Mahler (c4c), Pamela Dicks (NHS Scotland Children's Research Network and eYPAGnet), and Becca Leary (University of Newcastle ) The webinar will be introduced by Prof. Mark Turner, the CEO of…...
Undiagnosed Day 2024
ERN ReCONNET joins this international campaign to shed a light on this important matter as 350 million people around the world live with an undiagnosed disease. Research on our human genome (e.g., genome sequencing, exosome, and other techniques) have the pave the way to new strategies and approaches providing answers to some of these patients…...
