ERN RECONNET – NEWSLETTER N. 22 IS OUT!
The new ERN ReCONNET Newsletter n. 22 is out! Here is a list of our news: Collection of stories of SLE patients ERN ReCONNET transition of care survey for HCPs New Sjogren’s Syndrome Disease [...]
EURORDIS Patient Partnership Framework for the ERNs
EURORDIS launched the Patient Partnership Framework for the European Reference Networks (ERNs) – a new guide designed to support the implementation of stronger patient partnership through all [...]
5th International Symposium on IgG4-Related Disease
The 5th International Symposium on IgG4-Related Disease will be held from Thursday April 4th to Saturday April 6th, 2024 at the Star Rosa Grand Hotel (Milan, Italy). The 1st International [...]
Belgian Presidency Council of European Union
The Belgian presidency programme sets out the priorities and main directions of the Belgian presidency of the Council of the EU. The Belgian term takes place from the 1st of January to the 30th [...]
Artificial intelligence workplan to guide use of AI in medicines regulation
This important workplan will help the European medicines regulatory network (EMRN) to embrace the opportunities of AI for personal productivity, automating processes and systems, increasing [...]
Joint Heads of Medicines Agencies (HMA)/European Medicines Agency (EMA) Multistakeholder workshop on Patient Registries
This joint two-day hybrid HMA/EMA workshop on Patient Registries on Feb. 12-13, 2024, at the European Medicines Agency, Amsterdam, the Netherlands. The workshop follows on the successful [...]
EMA takes further steps to address critical shortages of medicines in the EU
Recently, EMA published details of the newly created solidarity mechanism developed by the EMA Medicines Shortages Steering Group (MSSG). This voluntary mechanism allows Member States to support [...]
FESCA event in the EU Parliament
Federation of European Scleroderma Associations (FESCA) held an event in the EU Parliament to present the findings of the patient survey, which highlighted the challenges faced by the Scleroderma [...]
2023 edition of the State of Health in the EU’s Synthesis Report
The Country Health Profiles are accompanied by a Synthesis Report presented by the European Commission, which highlights a selection of horizontal observations based on the analysis of the [...]
Phenotypic similarity-based approach for variant prioritization for unsolved rare disease: a preliminary methodological report
Interesting scientific article on a prioritization methodology aimed at solving the undiagnosed rare diseases. Here is the abstract for more detailed information and the pdf can be downloaded at [...]
