The European Commission has established a new €100 million partnership to boost research into rare diseases.
Launching on 1 January 2019, the European Joint Programme on Rare Diseases will aim to ensure that new treatments and diagnostic tools reach those who need them the most.
The programme will involve all of the European Reference Networks and will bring together resources at national and European level involving research funders, organisations and infrastructures, as well as universities, hospitals and patient organisations. It will establish a virtual platform, which will coordinate access to rare disease information, research data and services in order to optimise the information and knowledge exchange between research and clinical practice.
“Patients with a rare disease often suffer unnecessarily and die prematurely. We need to do much more to develop effective treatments and improve diagnosis. This partnership shows how we can pool Horizon 2020 funding and resources from EU Member States and beyond in order to save lives and protect people,” said Carlos Moedas, Commissioner for Research, Science and Innovation.
The programme will be co-ordinated by the French National Institute of Health and Medical Research (INSERM) and will run over five years.