Toolkit to Support Integration of European Reference Networks and National Healthcare Systems

April 2022

The European Reference Networks now have a clear governance structure for knowledge sharing and care coordination across the EU, but to benefit the 30 million people living with a rare disease in Europe, they must establish the operating mechanisms that will govern their interaction with national health systems. The integration of the ERNs and national health systems refers to the set of policies, rules and procedures required to anchor the ERN system to the national level so that all patients with a rare disease or complex condition across Europe can benefit from this model.

This toolkit is organised around 5 blocks of action at national level. For each area, the document collects the processes, tools, templates and best-practice examples to support the rare disease patient community engagement in the journey towards integrating ERNs into each national health system. These resources will need to be adapted to the local context through a structured dialogue with the rare disease community at national level, including national and regional health authorities, clinical leads, researchers, hospital managers, scientific societies, etc.  

The primary aim of this first edition of the ERN Integration Toolkit is to help the patient community engage with clinical teams, hospital managers and national/regional health authorities to take action towards integrating the ERNs into their national health systems. The Toolkit gathers a selection of existing methodologies, tools, templates and best practices that can be used to support implementation of the recommendations outlined in the ERN Board of Member States statement on integration of ERNs. The best practice examples have been developed based on a series of webinars on integration of ERNs organised by EURORDIS in 2021, during which ERN Board of Member State leads, ERN Coordinators and experts from the rare disease community were invited to present their best practices to the patient community.

Read the Toolkit

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases