The JARC book “Rare Cancer Agenda 2030: Ten Recommendations from the EU Joint Action on Rare Cancers” is the result of the project Joint Action on Rare Cancers which received funding from the European Union’s Health Programme (2014-2020). It puts forward the main recommendations of the Joint Action on Rare Cancers.
Ten Recommendations from the JARC:
- Rare cancers are the rare diseases of oncology
- Rare cancers should be monitored
- Health systems should exploit networking
- Medical education should exploit and serve healthcare networking
- Research should be fostered by networking and should take into account an expected higher degree of uncertainty
- Patient-physician shared clinical decision-making should be especially valued
- Appropriate state-of-the-art instruments should be developed in rare cancer
- Regulation on rare cancers should tolerate a higher degree of uncertainty
- Policy strategies on rare cancers and sustainability of interventions should be based on networking
- Rare cancer patients should be engaged
The book enshrines many of the distinct features of rare cancers among rare diseases, with which they share most of the issues that are typical of rarity. Through these recommendations, its authors hoped to influence the EU’s policy agenda on rare cancers in the years to come.
You can access the JARC book here
Key authors of the JARC book have also developed a layman version of the book. You can access it here.