Activities in the Network

Research

The European Commission’s science and knowledge service

Joint Research Centre

European Platform on Rare Diseases Registration

3rd European Reference Networks Conference Vilnius, 9 March 2017

  

See full presentation

WHAT IS THE RD-CONNECT COMMUNITY?

The RD-Connect Community is an independent, non-governmental, not-for-profit, international association of individuals and organizations sharing the vision of building an open community that works to improve rare disease research. The Community’s mission is to promote, facilitate and accelerate rare disease research by maximizing the availability and (re)use of rare disease data and biosamples through provision of infrastructure, tools and services to share, analyse and link datasets and biosamples in a secure and regulated way. By promoting data sharing and analysis tools and the data sharing ethos among rare disease researchers and clinicians and by raising awareness among patient communities and policy makers, the community aims to maximise the impact of the tools and services developed by RD-Connect members.

 

See Official ERNs Brochure

ERNs’ virtual consultations are carried out through the CPMS system, these advisory boards follow a series of steps listed below. Experts across Europe are invited to collaborate giving advice in consultation panels in the diagnosis or treatment of low prevalence and complex conditions

 

More Information

Cookies make it easier for us to provide you with our services. With the usage of our services you permit us to use cookies.
More information Ok