ERN GUARD-Heart

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

[ERN GUARD-Heart @ERNGuardHeart]

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]

Hereby the fourth newsletter of 2024, with topics:
https://t.co/hRftPSLomy
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]

Listen to episode 7: Sophie Muir (Timothy Syndrome Alliance) and Gaelle Marguin (Petit Cœur de Beurre)
https://t.co/TK9ui29qnb

#podcast #EU4Health #ernguardheart #rarecardiacdisease #patientexperience

[ERN GUARD-Heart @ERNGuardHeart]

Listen to episode 6: Ester Costafreda (SAMS) and Carmen Balan (Romania Asociației CardioGen)
https://t.co/7bRehpavLm

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

[ERN GUARD-Heart @ERNGuardHeart]

Hereby you can watch the recording 19; Innovative therapy in HCM
https://t.co/5q8HIAwGgr

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

[ERN GUARD-Heart @ERNGuardHeart]

Hereby you can watch the recording 18: Arrhythmias and ablations in very small patients
https://t.co/nyexJQMxz3

#Webiner #EU4Health #europe #guardheart #ernguardheart #ablations #Pediatrics #arrhythmias

[ERN GUARD-Heart @ERNGuardHeart]

Listen to episode 3, Lorraine McGlinchey (Irish Heart Foundation) and Sophie Pierre (AMRYC - Association des Maladies Héréditaires du Rythme Cardiaque)
https://t.co/i7i9qulpuf

#podcast #EU4Health #ernguardheart #rarecardiacdisease

[ERN GUARD-Heart @ERNGuardHeart]

Hereby you can watch the recording 17 Pediatric ARVC: diagnosis, family screening, phenotype and outcome

https://t.co/yZ2cebJTRp
#Webinar #EU4Health #europe #guardheart #ernguardheart
#ARVC #pediatric #screening #phenotyping #outcomes

[ERN GUARD-Heart @ERNGuardHeart]

Listen to episode 2, Inês Pinto Gonçalves (Associação Coragem) and Giovanna Campioni (AICCA)
https://t.co/GUULuMnMgF

#podcast #EU4Health #ernguardheart #rarecardiacdisease #achd

[ERN GUARD-Heart @ERNGuardHeart]

Hereby you can watch the recording 16: Cardiac amyloidosis: from diagnosis to management
https://t.co/Odtk6EpAU3

#webinar #EU4Health #europe #guardheart #ernguardheart #CardiacAmyloidosis #diagnosis #Management

[ERN GUARD-Heart @ERNGuardHeart]

https://t.co/cxAGiyK47P

[ERN GUARD-Heart @ERNGuardHeart]

In March we started recording a podcast series in which all #ePags or #patientrepresentatives are requested to participate.

Listen to episode 1, with Simone Louisse #Hart4Onderzoek & Jerker Liljestrand #HCMSwedish Society

#podcast #EU4Health #rarecardiacdisease #HCM #achd

[ERN GUARD-Heart @ERNGuardHeart]

Listen to Episode 38: Hospital Madrid – Maria Espinosa & Ana Fernández Avila (Duration:13.45) https://t.co/qD3sC29Mpm

#podcast #ernguardheart #EU4Health #europe #interview #hospital #Madrid

[ERN GUARD-Heart @ERNGuardHeart]

Hereby our latest newsletter:
Cardiomyopathy Awareness
Save The Date: board meeting
Joint action on Integration of ERNs into National Healthcare systems JARDIN
Who are our ePAG’s with Katja Laine
CPMS 2.0 Desktop version
Latest publications
#europeannetworks #EU4Health

[ERN GUARD-Heart @ERNGuardHeart]

Each week one of our member-centres is in the spotlight with an interview of the main representative and one of her/his junior colleagues.

Episode 37: Hospital Münster – Eric Schulze Bahr & Gerhard Diller

https://t.co/CQmlLBzABM

[ERN GUARD-Heart @ERNGuardHeart]

Watch the powerfull story of Ruth, chair and epag of our patient network board.....

[ERN GUARD-Heart @ERNGuardHeart]

Listen to Episode 36: Hospital Fondazione Policlinico Universitario Agostino Gemelli Rome – Massimo Massetti & Maria Grandinetti (Duration:17:41)

#podcast #ernguardheart #EU4Health #europe #interviews #hospital #hospitalrome

[ERN GUARD-Heart @ERNGuardHeart]

Listen to Episode 35: Hospital Zagreb – Davor Milicic & Ivo Planinc (Duration:15:11)

https://t.co/ijymWLfAa0

#podcast #ernguardheart #EU4Health #europe #interviews #hospital #hospitalzagreb

[ERN GUARD-Heart @ERNGuardHeart]

Please, find attached the flyer for the next ERN Webinar, subscribe via the link and add it to your agenda.

Register now to receive the link: https://t.co/PsCqzsbTEt

#webinar #HCM #RareCardiacDiseases #Therapy #ErasmusMc #puertadehierromajadahonda #hopitalpitiesalpetriere