“European Reference Networks: A success story for patients living with a rare disease”, new booklet just issued by the EU Commission

The European Commission has published a booklet celebrating the European Reference Networks, which since 2017 have connected rare disease experts across Europe so that no patient is left behind, wherever they live. Through real-life stories, it shows how the 24 networks have changed patients’ lives: from long-awaited diagnoses to pioneering treatments, research advances and closer […]

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What are the European Reference Networks (ERNs) and why it is important that the pulmonary hypertension community participate in its work

The European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex on rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. The first ERNs were launched in 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26

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