The ESHG Executive Board has officially endorsed the Call to Action from the Expert Conference on Rare Diseases – Towards a new European policy framework on rare diseases: “Building the future together for rare diseases”, October 25 and 26, 2022 in Prague, with special focus on the IVDR-related statements of the document.
The ESHG has addressed a formal letter to the responsible person at the Czech Ministry of Health, the check Republic presiding the Council of the European Union in the second half of 2022, specifically highlighting the importance of lowering the performance study requirements for 'orphan diagnostics' at the beginning of test implementation (when clinically required) without having to lose quality assurance.
- Download Call to Action
- Technical meeting under the auspices of the Presidency of the Czech Republic in the Council of the EU. Brno, Czech Republic, July 23, 2022.
- Download Report: Towards a New European Policy Framework: Building the future together for rare diseases
- Eurordis Press Release: "21 Member States endorse Czech EU Presidency’s Call to Action on rare diseases at EPSCO Council Meeting"