Researchers from the Department of Medical Genetics and more than fifty researchers and practitioners from more than 34 organisations across Europe recently discussed the progress and results of the European Union project called “Joint Action on Rare Cancers” (JARC) in Belgium. The project is funded by the European Commission's Horizon 2020 programme.
The closing meeting of the JARC project was held in mid-September in Brussels where the participants and the invited guests received a summary book, which will also be downloadable from the following website:
www.jointactionrarecancers.eu.
The experts have come up with a 10-point message about rare cancers:
- Rare cancers are rare diseases of oncology
- Rare cancers need to be monitored
- Rare cancers need to be managed within networks
- Medical training should also take place within a network, with the development of specialized training systems
- Networks should support research and take into account the greater uncertainty
- Special evaluation of patient-doctor relationships is essential in the decision-making
- Appropriate, up-to-date procedures for rare cancers should be developed
- The regulation of rare cancers should take into account the higher degree of uncertainty
- Policy strategies on rare diseases and sustainability of interventions should be network-based
- Rare cancer patients need special treatment
Along these points, researchers, experts and policymakers will work together to coordinate diagnostics and care on a national level, so that citizens with these rare diseases can receive support.
More information:
Dr. Béla Melegh, +36-72-501500/36427, melegh.bela@pte.hu
Source:
PTE