Data sharing is integral to all activities of future ERNs (e.g. enabling expertise to travel, providing virtual care, conducting research, generating best practice guidelines, training, et. al.) and indeed to the advancement of knowledge and expertise in rare diseases more broadly.  To leverage the experiences of the eHealth field and combine these with the knowledge and experience of the rare disease ERN community, RD-ACTION established a Task-Force on Interoperable data sharing in the framework of the operation of ERNs. In 2017, this was renamed as the Task-Force on Interoperable data-sharing in the Rare Diseases and eHealth communities

The TF was initiated in November 2015 following long consultation with DG Santé colleagues and the Commission Expert Group on Rare Diseases  in order to formalise collaboration between the rare disease and eHealth communities.

This Task Force is Chaired by Victoria Hedley and Kate Bushby, as WP6 Leads

It unites experts from several key rare disease and eHealth initiatives: Task-Force Membership May 2016

Select Outputs to-date:

• TF 1st year Summary and next steps for 2017 (this report explains the achievements of the TF to-date )
• Exploratory Paper – Convergence of Rare Diseases and eHealth initiatives (this paper outlines the need for collaboration between these fields)
• Meeting Report 30-6-16-of the TF on Interoperable Data-sharing in the framework of ERNs

• Meeting Report – Task Force on Interoperable Data-Sharing in the framework of ERNs (this is the report of our meeting on 18th February 2016 in Brussels)