#What Do I Know About Rare Diseases ?

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What are European Reference Networks (ERN)? What is their role?

 

In 2017, the first European Reference Networks (ERNs) were created, under the aegis of the European Commission. These ERNs are networks in which healthcare actors from all over Europe participate, based on the model of the French rare disease networks.
The ERNs involve more than 900 highly specialized care units and more than 300 hospitals in 26 Member States. There are 24 European Reference Networks of which 8 of the coordinators are French.
Their objectives are :
– To improve clinical care by developing guidelines, training and sharing knowledge.
– Ensure the participation of key stakeholders, including patients and patient associations.
– Develop research activities and clinical trials to improve understanding of the disease.
– Implement new information systems to enable clinical collaboration.

For more information go to => https://ec.europa.eu/health/ern/networks_en