ERN GUARD-Heart

@ERNGuardHeart

ERN GUARD-Heart is part of the European Reference Networks for rare or low-prevalence disease and focuses on rare and complex diseases of the heart.
@AMC_nl

Amsterdam, The Netherlands guardheart.ern-net.eu Joined November 2018

203 Following 572 Followers 196 Posts

Latest posts 5

ERN GUARD-Heart @ERNGuardHeart Dec 30, 2024

Hereby the sixth newsletter of 2024, with topics:
- ERICA Conference in Udine
- Next board-meeting 2025
- Online: ERDERA website!
- ERNs evaluation results report
- Reminder: HCP Performance indicators, 31 December 2024!
- Latest ERN GUARD-Heart Publication (s)

ERN GUARD-Heart @ERNGuardHeart Aug 28, 2024

Hereby the fourth newsletter of 2024, with topics:
Conect4children.org
Agenda boardmeeting
Who are our ePAG’s, Inês Pinto Gonçalves-Portugal
LMNA PRIORITY project awarded prestigious Leducq grant
Upcoming Webinar
Latest Publications
#guardheart #europeannetworks #EU4Health

ERN GUARD-Heart @ERNGuardHeart Aug 20, 2024

Listen to episode 7: Sophie Muir (Timothy Syndrome Alliance) and Gaelle Marguin (Petit Cœur de Beurre)
guardheart.ern-net.eu/.../epag-podca…

#podcast #EU4Health #ernguardheart #rarecardiacdisease #patientexperience

ERN GUARD-Heart @ERNGuardHeart Aug 12, 2024

Listen to episode 6: Ester Costafreda (SAMS) and Carmen Balan (Romania Asociației CardioGen)
guardheart.ern-net.eu/.../epag-podca…

#podcast #EU4Health #ernguardheart #rarecardiacdisease #patientexperience #patientrepresentative

ERN GUARD-Heart @ERNGuardHeart Aug 6, 2024

Hereby you can watch the recording 19; Innovative therapy in HCM
youtu.be/PvkxWBx2CJw?si…

#webinar #EU4Health #EuropeanUnion #guardheart #ernguardheart
#HCM #cardiomyopathy #hypertrophiccardiomyopathy