Category: Uncategorized

Exchange Programme 2024-2025   Mobility agreement concerning the short-term visit of a healthcare professional in the framework of the ERN GUARD-Heart Exchange Programme 2024-2027

EU, please stand by the ERNs ERN GUARD-Heart has co-signed an open letter in which the ERN Network Coordinators and people living with a rare disease across Europe have asked Ursula von der Leyen (President of the European Commission), Roberta READ MORE

Podcast series In January 2023, ERN GUARD-Heart started with a weekly podcast series in which all HCP-members are requested to participate. The idea is that in each recording, the main representative of each member HCP and one of his/her colleagues (preferably an early career professional READ MORE

5 years evaluation process of the ERN’s An important activity for the upcoming months is the 5 years evaluation process of the ERN. This has officially started following the signature of the contract with the independent evaluation body on 9 READ MORE

ERN GUARD-Heart Webinars for experts This summer we started a series of educational webinars on all different thematic areas within our ERN for healthcare professionals. Each month, there will be a live webinar via ZOOM, where 2 cases will be READ MORE

All 24 ERNs Unite to Help Ukrainian Rare Disease Patients Share it with #ERNcare4Ua All 24 European Reference Networks (ERNs) have launched a dedicated website and social media campaign to collect information to help health professionals to find support for Ukrainian patients READ MORE

Heart-Core Registry ERN GUARD-Heart aims to develop a comprehensive approach for rare cardiac disease registration by establishing an overarching patient registry (the Heart-Core Registry) using standards and tools provided by the European Platform on Rare Disease Registration (EU RD Platform). READ MORE

Participation of patients with Long QT Syndrome in sports Health care professionals are invited to ask advice for their long-QT patients, with regard to their participation in sports. This can be done by uploading patients information in the Clinical Patient READ MORE