Case studies for public-private collaborations in the Rare Disease space – beyond the Together4RD Pilots
In addition to these initial 3 pilots, Together4RD has identified multiple case studies in the rare disease arena which may also serve as food for thought for other stakeholders wishing to follow suite and engage in projects.
A frequently-heard criticism of the two Statements on ERN-Industry interaction issued bythe Board of Member States of ERNs, was that not only are collaborations between ERNs and companies essential to enable ERNs to fulfil their research potential, but that seeking to avoid any interaction here is illogical and frankly a retrograde step for the field. For many years, experts argued, networks or other types of consortia or groups of non-industry actors, had been delivering successful projects and collaborations with industry, covering a wide range of activities.
One of the first activities for Together4RD was to explore some of these prior examples of engagement and collaboration, and a set of case studies were included to the 2023 Position Statement on collaboration between European Reference Networks and Industry, largely in the form of supplementary material. These case studies have been revised and updated and are included here as a tool to support ERNs and industry in considering what kind of projects might be beneficial for their communities.
For a list of all tools, please click here.