VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
The document outlining the Third Programme for the Unionʼs action in the field of health (Work Programme for 2019) is now available to view here
Many actions concern specifically the European Reference Networks:
- Rare disease registries for the European Reference Networks (2.1, pages 8-9, announcing a future call for proposals that should be launched after Easter): 5 ERNs have beneficiated from a Registry grant after the first call in 2016. The other 19 ERNs should answer this call for project proposals.
- European Reference Networks capacity and knowledge sharing through short term mobility and exchanges of healthcare professionals (8.24, pages 65-66);
- Assessment of healthcare providers wishing to join established ERNs (8.25, page 67);
- Development of an integrated assessment, monitoring, evaluation and quality improvement system (AMEQIS) for the European Reference Networks (8.26, pages 68-70);
- European Reference Networks workshops, seminars, studies (8.27, pages 71-72, our ‘Research Infrastructure” Workshop is foreseen under b).);
- Cooperation with the Joint Research Centre (9.1, pages 81-82, Thematic Area 3 on European Rare Disease Registry Infrastructure and rare disease registries for ERNs);
Additional information on annual health programmes can be found on the Consumers, Health, Agriculture and Food Executive Agency (CHAFEA) website here.
As a reminder, the funding for the ERNs for 2019-2022 was already detailed in the Work Programme for 2018.
More information on the EU Health Programme support to ERNs can be found here
