ERN GUARD-Heart

30/12/2024

Hereby the sixth and latest newsletter of 2024, with topics:

- ERICA Conference in Udine
- Next board-meeting in March 2025
- Online: ERDERA website!
- ERNs evaluation results report
- Reminder: HCP Performance indicators, 31 December 2024!
- A Happy New Year to you all
- Latest ERN GUARD-Heart Publication (s)

08/11/2024

Hereby the fifth newsletter of 2024, with topics:

- Webinar ->27-11-2024, at 17:00 ‘Cardiomyopathies and Pregnancy’
- Who are our ePAG’s?, with Giovanna Campioni - AICCA
- LMNA-cardiac collaboration with Citizen Health
- 16th ERN GUARD-Heart board meeting
- Save The Date, Next boardmeeting Friday14 March 2025
- Joint Transnational Call by ERDERA
- Latest ERN GUARD-Heart Publication (s)

07/10/2024

Last summer we started recording a podcast series in which all supporting partners are requested to participate.

Listen to episode 8 with Steve Cox and Premysl Stych`-> https://guardheart.ern-net.eu/podcast/epag-podcast-8-supporting-partners-steve-cox-and-premysl-stych/

04/10/2024

A showcase of activity at Amsterdam UMC last week! Donata Meroni and Nichola Larkins visited from the European Commission and were treated to presentations from members of the and community at Amsterdam UMC and across the Netherlands.

We were honoured that Hans van Goudoever opened the afternoon, followed by coordinators Arthur Wilde of ERN GUARD-Heart, Alberto Pereira Arias of Endo-ERN - European Reference Network and Petra Zwijnenburg from the Amsterdam UMC office.

Floor Halvorsen introduced the rigorous process required to become an expert centre in the Netherlands and Cor Oosterwijk showed how long Dutch patients have been advocating for high-quality care. Simone Louisse shared her experience as as did Nicole Wolf, an active clinical member of ERN-RND, European Reference Network for Rare Neurological Diseases.

Evidence-based medicines is at the heart of all ERNs and Ronald Cornet discussed the importance of data particularly in raredisease. An informative day all round!

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16/09/2024

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

We’ll be talking about on how the representatives involved in the network board, we are sharing relevant information on how they’ve engaged, struggles and good things too, to be effective on the role, being thought provoking, and finally; what to expect of their Network and their role. Some have just been appointed, others for quite some time.

Listen to episode 4 with Ruth Biller and Dr. Carola Ossenkopp-Wetzig: https://guardheart.ern-net.eu/podcast/epag-podcast-4-ruth-biller-and-carola-ossenkopp/

28/08/2024

Hereby the fourth newsletter of 2024, with topics:

- The launch of the ATS Registry!
- The launch of the FA registry!
- Conect4children.org
- Agenda online board-meeting 27th of September
- Who are our ePAG’s with Inês Pinto Gonçalves from Portugal
- LMNA PRIORITY project awarded prestigious Leducq grant
- Upcoming Webinar 25th of September
- Latest ERN GUARD-Heart Publication (s)

20/08/2024

In March we started recording a podcast series in which all ePags or patient representatives are requested to participate.
We’ll be talking about on how the representatives involved in the network board, we are sharing relevant information on how they’ve engaged, struggles and good things too, to be effective on the role, being thought provoking, and finally; what to expect of their Network and their role. Some have just been appointed, others for quite some time.

Listen to episode 7: Sophie Muir (Timothy Syndrome Alliance) and Gaelle Marguin (Petit Cœur de Beurre)
https://guardheart.ern-net.eu/podcast/epag-podcast-7-sophie-muir-and-gaelle-marguin/

12/08/2024

In March we started recording a podcast series in which all ePags or patient representatives are requested to participate.
We’ll be talking about on how the representatives involved in the network board, we are sharing relevant information on how they’ve engaged, struggles and good things too, to be effective on the role, being thought provoking, and finally; what to expect of their Network and their role. Some have just been appointed, others for quite some time.

Listen to episode 6: Ester Costafreda (SAMS) and Carmen Balan (Romania Asociației CardioGen)

https://guardheart.ern-net.eu/podcast/epag-podcast-6-ester-costafreda-and-carmen-balan/

06/08/2024

Hereby you can watch the recording 19; Innovative therapy in HCM
https://youtu.be/PvkxWBx2CJw?si=T3Njl5mzrHG42RVg

Nineteenth edition of our series of educational webinars for healthcare professionals on all different thematic areas within ERN GUARD-Heart. Each month, the...

30/07/2024

In March we started recording a podcast series in which all ePags or patient representatives are requested to participate.
We’ll be talking about on how the representatives involved in the network board, we are sharing relevant information on how they’ve engaged, struggles and good things too, to be effective on the role, being thought provoking, and finally; what to expect of their Network and their role. Some have just been appointed, others for quite some time.

Listen to episode 5, with Katja Laine (Finnish Association for Heart Children and Adults) and Stefan Bassant (LMNA Cardiac)

https://guardheart.ern-net.eu/podcast/epag-podcast-5-katja-laine-and-stefan-bassant/

22/07/2024

Hereby you can watch the recording 18: Arrhythmias and ablations in very small patients

https://youtu.be/90jtuZizhvA?si=j85r5bZi2CWCdaN1

Eighteenth edition of our series of educational webinars for healthcare professionals on all different thematic areas within ERN GUARD-Heart. Each month, the...

15/07/2024

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

We’ll be talking about on how the representatives involved in the network board, we are sharing relevant information on how they’ve engaged, struggles and good things too, to be effective on the role, being thought provoking, and finally; what to expect of their Network and their role. Some have just been appointed, others for quite some time.

Listen to episode 3, Lorraine McGlinchey (Irish Heart Foundation) and Sophie Pierre (AMRYC)

https://guardheart.ern-net.eu/podcast/epag-podcast-3-lorraine-mcglinchey-and-sophie-pierre/