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

 
 
Die Stimme der Menschen mit seltenen Krankheiten in EuropaEURORDIS Die internationale Stimme für Menschen mit seltenen Krankheiten. Rare Diseases International ist eine EURORDIS-InitiativeRare Disease International Ein moderiertes mehrsprachiges Forum, das Patienten, Familien und Experten zum Erfahrungsaustausch zusammenführt. RareConnect ist eine EURORDIS-Initiative RareConnect Das Rare Barometer Programm ist eine EURORDIS-Initiative, die Umfragen durchführt und die Erfahrungen von Patienten mit seltenen Erkrankungen in Fakten und Zahlen umwandelt, die wiederum Entscheidungsträgern vermittelt werden können.Rare Barometer Eine internationale Aufklärungskampagne, die jedes Jahr am letzten Tag im Februar stattfindet. Der Tag der Seltenen Erkrankungen ist eine EURORDIS-InitiativeRare Disease Day Nehmen Sie am größten Zusammentreffen von Interessenvertretern für seltene Krankheiten in Europa teil und besuchen Sie die zweijährliche Europäische Konferenz für Seltene Krankheiten und Orphan-Produkte (ECRD). ECRD ist eine EURORDIS-InitiativeEuropean Conference on Rare Diseases