We are delighted to inform you that the recordings of two highly important events for rare diseases, took place under the Czech EU Council Presidency, are available online.
The technical meeting “Early Diagnosis of Patients with Rare Disorders in the EU: Crucial Role of the Newborn Screening” was held on 23 July 2022 in Brno, Czech Republic. It aimed to bring to the table key stakeholders and discuss progress in three workstreams of the Screen4Rare initiative:
- Achieving consistency in the case definitions used in diseases included within national screening panels;
- Developing interoperable registries to chart the outcome for individuals identified by newborn screening (NBS);
- Establishing a blueprint for the ‘newborn screening pathway’ to optimize practice in the EU in this important area.
The meeting supported the development of key performance indicators to identify good practices in NBS programs with recommendations for data collection and governance in EU Member States.
The second event, the expert conference “Towards a New European Policy Framework: Building the future together for rare diseases”, took place in Prague, Czech Republic, on the 25 and 26 October 2022. This event bridges a series of technical and ministerial gatherings on proposals for a renewed strategy for rare diseases, following the Slovenian and French presidencies.
Stakeholders in the rare disease community are particularly keen to continue discussions on rare diseases and focus on how the Czech EU Council Presidency can take continued steps towards a coordinated strategy for rare diseases. The aim is to better address current unmet needs by setting meaningful goals for patients, families and society at large, integrated at the national and regional levels.
Watch the meeting recordings
