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ERNGuardHeart's profile picture. 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

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

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ERNGuardHeart's profile picture.
ERN GUARD-Heart
 @ERNGuardHeart
28 Ağu 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

ERNGuardHeart's tweet image. 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
ERNGuardHeart's tweet image. 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
ERNGuardHeart's tweet image. 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
ERNGuardHeart's tweet image. 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
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ERNGuardHeart's profile picture.
ERN GUARD-Heart
 @ERNGuardHeart
20 Ağu 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

ERNGuardHeart's tweet image. 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
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ERNGuardHeart's profile picture.
ERN GUARD-Heart
 @ERNGuardHeart
22 Tem 2024

Hereby you can watch the recording 18: Arrhythmias and ablations in very small patients youtu.be/90jtuZizhvA?si… #Webiner #EU4Health #europe #guardheart #ernguardheart #ablations #Pediatrics #arrhythmias

ERNGuardHeart's tweet image. Hereby you can watch the recording 18: Arrhythmias and ablations in very small patients youtu.be/90jtuZizhvA?si… #Webiner #EU4Health #europe #guardheart #ernguardheart #ablations #Pediatrics #arrhythmias
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ERNGuardHeart's profile picture.
ERN GUARD-Heart
 @ERNGuardHeart
15 Tem 2024

Listen to episode 3, Lorraine McGlinchey (Irish Heart Foundation) and Sophie Pierre (AMRYC - Association des Maladies Héréditaires du Rythme Cardiaque) lnkd.in/e6Qwry6A #podcast #EU4Health #ernguardheart #rarecardiacdisease

ERNGuardHeart's tweet image. Listen to episode 3, Lorraine McGlinchey (Irish Heart Foundation) and Sophie Pierre (AMRYC - Association des Maladies Héréditaires du Rythme Cardiaque) lnkd.in/e6Qwry6A #podcast #EU4Health #ernguardheart #rarecardiacdisease
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ERNGuardHeart's profile picture.
ERN GUARD-Heart
 @ERNGuardHeart
11 Tem 2024

Hereby you can watch the recording 17 Pediatric ARVC: diagnosis, family screening, phenotype and outcome youtu.be/-F7w2hc6bNA?si… #Webinar #EU4Health #europe #guardheart #ernguardheart #ARVC #pediatric #screening #phenotyping #outcomes

ERNGuardHeart's tweet image. Hereby you can watch the recording 17 Pediatric ARVC: diagnosis, family screening, phenotype and outcome youtu.be/-F7w2hc6bNA?si… #Webinar #EU4Health #europe #guardheart #ernguardheart #ARVC #pediatric #screening #phenotyping #outcomes
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ERNGuardHeart's profile picture.
ERN GUARD-Heart
 @ERNGuardHeart
8 Tem 2024

Listen to episode 2, Inês Pinto Gonçalves (Associação Coragem) and Giovanna Campioni (AICCA) guardheart.ern-net.eu/.../epag-podca… #podcast #EU4Health #ernguardheart #rarecardiacdisease #achd

ERNGuardHeart's tweet image. Listen to episode 2, Inês Pinto Gonçalves (Associação Coragem) and Giovanna Campioni (AICCA) guardheart.ern-net.eu/.../epag-podca… #podcast #EU4Health #ernguardheart #rarecardiacdisease #achd
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ERNGuardHeart's profile picture.
ERN GUARD-Heart
 @ERNGuardHeart
4 Tem 2024

Hereby you can watch the recording 16: Cardiac amyloidosis: from diagnosis to management youtu.be/w_eKZh-wkqg?si… #webinar #EU4Health #europe #guardheart #ernguardheart #CardiacAmyloidosis #diagnosis #Management

ERNGuardHeart's tweet image. Hereby you can watch the recording 16: Cardiac amyloidosis: from diagnosis to management youtu.be/w_eKZh-wkqg?si… #webinar #EU4Health #europe #guardheart #ernguardheart #CardiacAmyloidosis #diagnosis #Management
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ERNGuardHeart's profile picture.
ERN GUARD-Heart
 @ERNGuardHeart
20 Haz 2024

Listen to Episode 38: Hospital Madrid – Maria Espinosa & Ana Fernández Avila (Duration:13.45) guardheart.ern-net.eu/podcast/38-hos… #podcast #ernguardheart #EU4Health #europe #interview #hospital #Madrid

ERNGuardHeart's tweet image. Listen to Episode 38: Hospital Madrid – Maria Espinosa & Ana Fernández Avila (Duration:13.45) guardheart.ern-net.eu/podcast/38-hos… #podcast #ernguardheart #EU4Health #europe #interview #hospital #Madrid
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ERNGuardHeart's profile picture.
ERN GUARD-Heart
 @ERNGuardHeart
13 Haz 2024

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

ERNGuardHeart's tweet image. 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
ERNGuardHeart's tweet image. 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
ERNGuardHeart's tweet image. 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
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ERNGuardHeart's profile picture.
ERN GUARD-Heart
 @ERNGuardHeart
10 Haz 2024

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 lnkd.in/etFAPX-a

ERNGuardHeart's tweet image. 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 lnkd.in/etFAPX-a
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ERNGuardHeart's profile picture.
ERN GUARD-Heart
 @ERNGuardHeart
3 Haz 2024

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

Bu gönderi artık mevcut değil.
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ERNGuardHeart's profile picture.
ERN GUARD-Heart
 @ERNGuardHeart
30 May 2024

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

ERNGuardHeart's tweet image. 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
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ERNGuardHeart's profile picture.
ERN GUARD-Heart
 @ERNGuardHeart
16 May 2024

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: lnkd.in/e74Z_x6q #webinar #HCM #RareCardiacDiseases #Therapy #ErasmusMc #puertadehierromajadahonda #hopitalpitiesalpetriere

ERNGuardHeart's tweet image. 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: lnkd.in/e74Z_x6q #webinar #HCM #RareCardiacDiseases #Therapy #ErasmusMc #puertadehierromajadahonda #hopitalpitiesalpetriere
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eurordis's profile picture. An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.

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Solve_RD's profile picture. Solve-RD is a H2020 funded flagship EU project. We will solve large numbers of rare diseases, for which a molecular cause is not known yet.

Solve-RD

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vascern's profile picture. Gathering the best expertise in Europe to provide accessible cross-border healthcare to patients with rare vascular diseases #ERNeu #RareDiseases

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95Rare's profile picture. 95, Rare Alliance Greece is a Greek non-profit Organization advocating for all who live with a rare & an undiagnosed #RareDisease 🔺 #ΣπάνιεςΠαθήσεις #Υγεία

95, Rare Alliance Greece

@95Rare
Greasylightbulb's profile picture. Investigating genetic causes of sudden cardiac death and advocating for heart health #cardiogen. Also: football, bikes, film, nature and the Wellington scene.

Tom

@Greasylightbulb
ScottishHFNF's profile picture. Est 2005, the Scottish Heart Failure Nurse Forum provides professional & educational support to nurses & AHP specialising in #heartfailure in 🏴󠁧󠁢󠁳󠁣󠁴󠁿

SHFNF

@ScottishHFNF
Rhythmisit's profile picture. Arrhythmia patient. AADs, ablations, #LBBAP, DOAC. @escardio Patient Engagement Officer, Member #ESCPatientForum. Private account, opinions are my own.

Inga Drossart

@Rhythmisit
ACHA_Heart's profile picture. Our mission: To empower the #CHD community by advancing access to resources and specialized care that improve patient-centered outcomes. #CHDCare4Life

ACHA

@ACHA_Heart
conqueringchd's profile picture. Creating visibility and empowering all impacted by CHD through awareness, knowledge, community, and research.

Conquering CHD

@conqueringchd
interactiveachd's profile picture. The BACH Program is committed to advancing care for adults with CHD by training future leaders in our field and by advancing medical science through research.

Boston Adult Congenital Heart Program

@interactiveachd
BritishCardioSo's profile picture. Official X account for BCS || Championing cardiovascular medicine in the UK for over 100 years We're on BlueSky - https://t.co/FRnULWyvrQ

British Cardiovascular Society

@BritishCardioSo
CardiacNeuro's profile picture. Working together and partnering with families to optimize neurodevelopmental outcomes for #CHD through clinical, quality, and research initiatives.

Cardiac Neurodevelopmental Outcome Collaborative

@CardiacNeuro
HeartSomerville's profile picture. ❤️ We work with, support and campaign for young people and adults born with a heart condition. ❤️ #UK #CHD #ACHD ❤️ 🤝Account managed Mon-Fri.

Somerville Heart Foundation

@HeartSomerville
RodrigueGarcia4's profile picture. Professor of Cardiology | MD PhD I Electrophysiologist I Poitiers University Hospital 🇫🇷

Rodrigue Garcia

@RodrigueGarcia4
ZipperSisters's profile picture. Sisterhood of Women with Congenital Heart Defects We are 1 in 100! #CHD #ACHD awareness. Patient first. Established 2012

Zipper Sisters

@ZipperSisters
NENC_CHDN's profile picture. Our vision is to provide high quality care for CHD patients across the North East and North Cumbria Contact us at nuth.enquiries-nencchdn@nhs.net

North East and North Cumbria CHD network

@NENC_CHDN
HendrikSager's profile picture. interventional cardiologist, intensivist, interested in innate immunity, #ERCStG, German Heart Center Munich, former PostDoc at @MatthiasNahrend lab/@MGHCSB

Hendrik B. Sager

@HendrikSager
SOPedsEcho's profile picture. The Society Of #Pediatric #Echocardiography (SOPE) is a forum for education, collaboration, advocacy, & networking for #congenital #echocardiography #SOPE

SOCIETY OF PEDIATRIC ECHOCARDIOGRAPHY

@SOPedsEcho
22tabbah_randa's profile picture. Assistant Professor of Cardiology Cardiac imaging and Device therapy European Certification in Adult Echocardiography,EHRA,EACVI,ESC, ACC

Dr Randa TABBAH

@22tabbah_randa
AlsaiedTarek's profile picture. Cardiologist , #CHD specialist, #Fontan management , #echofirst, #whycmr , #ACC and #SCMR member, happy father and husband. RT not endorsement. @UPMC @HviUpmc

Tarek Alsaied

@AlsaiedTarek
OungSavly's profile picture. ♥️Chief of the Division of Pediatric Cardiology KANTHA BOPHA Children’s Hospital/CHD Pediatric Echo lab, Certified EACVI-CHD ECHO, FAPSC, oungsavly007@gmail.com

Oung Savly MD FACC FASE FESC FAAP FEACVI 🇰🇭

@OungSavly
MartenSiemelink's profile picture. Innovation manager @ Genetics Department, UMC Utrecht. MD, PhD.

Marten Siemelink

@MartenSiemelink
GregMellor7's profile picture. Clinical Lead for Heart Rhythm Management and Inherited Arrhythmia Syndromes, Royal Papworth Hospital.

Greg Mellor

@GregMellor7
BegonyaNafria's profile picture. @CovidWarriors Patient Engagement in Research Coordinator at @SJDbarcelona_es Coordinator of Share4Rare and KIDS Barcelona. PhD student. All views my own

Begonya Nafría

@BegonyaNafria
AKasiakogias's profile picture. MD, PhD, Cardiologist | 🫀Inherited Cardiac Conditions & 🧲CMR | Nucleus Member, ESC Working Group on Myocardial & Pericardial Diseases | @acardioEKPA @RBandH

Alex Kasiakogias

@AKasiakogias
QTlargo's profile picture. Cardióloga ❤️🩺

Dafne

@QTlargo
LCSommerfeld's profile picture. Postdoc | 🫀🔬 Medical Scientist | Arrhythmias | Biomarkers | Hamburg-Eppendorf @UCCS_HH | @DGK_org Ambassador Basic Science and @YoungDGK Nucleus Member

Laura Sommerfeld

@LCSommerfeld
RJurcut's profile picture. Professor of Cardiology. Coordinator of the Expert Center for Rare Genetic Cardiovascular Diseases in Bucharest Romania. Passionate about CardioGenetics.

Ruxandra Jurcut

@RJurcut
FranBermudz's profile picture. | MD, PhD | HU Virgen de las Nieves, Granada, Spain. HF and Inherited CV diseases ORCid: https://t.co/XYLn2dZwmR

🕊️Fran Bermúdez-Jiménez ن

@FranBermudz
AndriPapadopou3's profile picture. European Commission - working on Health - Rare Diseases and Registries @EU_Sciencehub #JointResearchCentre views are my own

Andri Papadopoulou

@AndriPapadopou3
maria_cavaller's profile picture. Patient Engagement & Therapeutic Development Director @eurordis 🇪🇺 Pharmacist 💊 #regulatory #ccess #rarediseases #globalhealthpolicy

Maria Cavaller Bellaubi

@maria_cavaller
roddywalsh's profile picture. Scientist researching genetics/genomics of inherited heart disease 🧬🫀 Liberal extremist | Ex-traveller 🌍 He/him

Roddy Walsh 🇪🇺 🇺🇦

@roddywalsh
PriyaPBK's profile picture. MD 🇩🇰 #ForensicCardiology @Rigshospitalet @Retsmedicin 🔎🫀🧬 Adm @RigsHeart 🏥♥ Reviewer @EHJCREiC ✏️ Co-chair #EHRA_ESC Digital & mHealth committee 💻

Priya Bhardwaj

@PriyaPBK
caretently's profile picture. Creating content with CARE for the rare disease community. Medical writing, translation and content creation services. Formerly worked at @vascern + @orphanet

Natasha Barr

@caretently
palinkaseszti's profile picture. M.D., Ph.D. | cardiology resident | echofirst | stress echo fan | HCM & genetics lover | clinical trialist | ex pro 🎾 player

Eszter Dalma Pálinkás

@palinkaseszti
PolonaLeQS's profile picture. genomics, variant analysis, rare diseases, inherited cardiac diseases

Polona

@PolonaLeQS
heartuni_org's profile picture. Free web-based global education resource and training tool focused on pediatric acquired and pediatric #CHD and #ACHD. Editors:@JonathanWindram

HeartUniversity.org

@heartuni_org
lorrainemac10's profile picture. RGN, MSc, Adult Nurse Lecturer UU, Channelopathy and Surgery PhD researcher Ulster University, ePAG ERN GUARD-Heart ❤ Tweets are mine Retweet not endorsement.

Lorraine McGlinchey

@lorrainemac10
ESCAdvocacy's profile picture. Official account for @escardio advocacy updates. The leading voice in the EU to reduce the burden of cardiovascular disease. #ESCAdvocacy #patientsfirst

European Society of Cardiology Advocacy

@ESCAdvocacy
Hartedroom's profile picture. Goed doel dat zich inzet voor kinderen met cardiomyopthie een ernstige hartspierziekte. Hartedroom heeft een 0% overhead 100% onderzoek beleid.

Stichting Hartedroom

@Hartedroom
CincyKidsHeart's profile picture. The Heart Institute at @CincyChildrens - Sharing patient stories, groundbreaking research, community partnerships, and latest news as it happens!

Cincinnati Children's Heart Institute

@CincyKidsHeart
ZonMw's profile picture. Met kennis werken aan een goede gezondheid voor iedereen.

ZonMw

@ZonMw
vrouwenhartnl's profile picture. Vrouwenhart https://t.co/SXwcUPLcAN

Vrouwenhart.nl

@vrouwenhartnl
CHD_education's profile picture. I retweet didactic educational content for pediatric and congenital heart disease #CHD (webinars, podcasts, and tweetorials).

Pediatric/congenital cardiology education

@CHD_education
Erfocentrum's profile picture. NATIONAAL INFORMATIECENTRUM ERFELIJKHEID

@erfocentrum

@Erfocentrum
NewbornCardiac's profile picture. A group dedicated to protecting the development of newborns born with congenital heart defects. All are welcome. SIG of @cardiacneuro

Cardiac Newborn Neuroprotective Network

@NewbornCardiac
AliZaidiMD's profile picture. Section Head, Mount Sinai Adult Congenital Heart Disease Center

Ali N Zaidi, MD

@AliZaidiMD
Clauss_MD's profile picture. Cardiologist | Clinician-Scientist | Translational Electrophysiology

Sebastian Clauss

@Clauss_MD
FontanOutcomes's profile picture. A lifespan learning network of patients, families, clinicians, and researchers seeking to transform outcomes for people with single ventricle heart disease.

FON

@FontanOutcomes
DrJasmineGrewal's profile picture. Director, Virani Provincial Adult Congenital Heart Program; Echocardiography, Professor- UBC, Interested in #CardioObstetrics, #ACHD

Dr Jasmine Grewal MD

@DrJasmineGrewal

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