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

La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rare, Rare Diseases International est une initiative d'EURORDISRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect est une initiative d'EURORDIS RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases