The rules and simplification measures put in place for Horizon 2020 were widely acknowledged by stakeholders as a big step towards a more attractive and easier to use programme. Based on this experience, work has been ongoing on Horizon Europe’s Implementation Strategy to set out how the programme will be managed in practice to achieve its ambitious…
In the EU Health Newsletter released today, there is a focus on the EJP RD as « an opportunity for the ERNs to leverage on research ». The EJP RD is honored and thankful for this opportunity, our commitment on overcoming fragmentation on rare disease research as well as on strengthening the collaboration with the European Reference…
ECRIN – European Clinical Research Infrastructure Network – has established a COVID-19 Taskforce with its national partners to confront the international COVID-19 crisis. ECRIN is working in together with the healthcare systems taking care of patients as highest priority. At the same time, ECRIN is supporting the researchers by joining forces worldwide to find a…
Large-scale sequencing initiatives are generating massive volumes of clinical genomic data that have the potential to inform research into human health and disease. But controlling access to these data is currently a cumbersome endeavor. Researchers must be properly authorized and their intended use must match the datasets’ consented use. The GA4GH Data Use and Researcher…
Elixir has launched a Slack Workspace to discuss and exchange ideas on SARS-CoV-2 research initiatives, consider collaboration opportunities across ELIXIR Nodes and share results of your work on COVID-19 with other ELIXIR members. If you are interested in joining this initiative, feel free to connect with ELIXIR on Slack or email Katharina Lauer to be…
The IRDiRC new review has been published on Nature Reviews – Drug Discovery. The paper is authored by the Orphan Drug Development Guidebook (ODDG) Task force that has helped reaching the IRDiRC goal 2 ‘1000 new therapies for rare diseases will be approved, the majority of which will focus on diseases without approved options’ by 2027.…
Share4Rare has developed two interesting webinars together with Melanoma Patient Network Europe, Newcastle University, and World Duchenne Organization; both are in April. ‘Online Advocacy – Social Media & Valuable Tools’. The internet has fundamentally altered the way and the speed with which we access information- and that also plays a major role in patient advocacy!…
ECRD 2020 will now take place exclusively online, on 14-15 May. More people than ever before will now be able to participate in ECRD from the safety and comfort of their own home, connecting via an interactive online platform wherever they are in the world. Register for ECRD 2020 online at the new reduced rates.…
Here is a list of links to relevant resources and support information developed and provided by several ERNs and the EU aimed at fight the COVID-19 outbreak in a coordinate effort. The list and links provided by the ERNs are constantly updated. COVID-19 Clinical Management Support System (CMSS) launched by the European Commission to support…
EATRIS mission is to accelerate the translation of promising scientific discoveries into benefits for patients. The focus of its main activities is on bridging the innovation gap between the lab and the clinic as well as offer services and expertise to increase chances of research to successfully reach patients. The EATRIS infrastructure’s resources are therefore…