Explicit inclusion of European Reference Networks (ERNs) in the ECF is vital for health competitiveness, rare disease care and patient support The current proposal for the European Competitiveness Fund (ECF), specifically Chapter V (Articles 36 and 37) on Health, biotech, agriculture and bioeconomy, aligns perfectly with the mission of European Reference Networks (ERNs).
ASV
ARVC-Selbsthilfe e.V.
NGO · Germany · EU Transparency Register 569004047856-53
3
positions filed
in the 665 files tracked
2
legislative files
of 665 tracked
0
with a full position paper
attached to a submission
Counts here are a floor, never a total: they cover the 665 consultation files tracked so far (57,774 submissions, mostly 2021–26), so an organization's real filing history is larger, not smaller.
Who they are
Among the 1106 non-governmental organisations on this site, they rank #509 by legislative files engaged, a count of participation, not a measure of influence.
1
declared lobbying FTE
self-declared
–
declared costs / yr (floor)
0
EP accreditations
as declared to the register
2022
in the register since
Declares membership of
- ACHSE e.V. (https://www.achse-online.de)
- Bundesverband Herzkranke Kinder e.V. (https://bvhk.de/)
- DZHK-Patientenbeirat (https://dzhk.de/das-dzhk/struktur-und-gremien/patientenvertretung)
- European Alliance for Cardiovascular Health EACH (https://www.cardiovascular-alliance.eu/)
- European Patient Advocacy Group des ERN GUARD-Heart (https://guardheart.ern-net.eu/patients/epags/)
- EURORDIS (https://www.eurordis.org/)
- Global Heart Hub Cardiomyopathy Patient Council (https://globalhearthub.org/patient-councils/cardiomyopathy/)
- Landes-Arbeitsgemeinschaft für kardiologische Prävention und Rehabilitation in Bayern e.V. (Herz-LAG Bayern) (https:/…
- NAKOS (https://www.nakos.de/)
- NATON (https://naton.network/)
- Psychisch belastete Herzpatienten e.V. (https://herz-ohne-stress.de/)
- SADS Deutschland e.V. (https://sads-deutschland.de/)
- and 1 more
Self-declared to the EU Transparency Register (snapshot 14 Oct 2026).
- Register category
- Non-governmental organisations
- Head office
- Unterschleissheim, Germany
Self-declared to the EU Transparency Register (snapshot 14 Oct 2026); cost bands are floors, not audited totals. Reused under Commission Decision 2011/833/EU.
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Their record over time
ARVC-Selbsthilfe e.V. filed 3 positions between 12 Nov 2025 and 19 May 2026, across 2 of the 665 legislative files tracked here.
2025 · 1 filed2026 · 2 filed
What they argued
ARVC-Selbsthilfe e.V. Germany warmly welcomes the Safe Hearts Plan and the planned Cardiometric Health Checks. However, in our view, important elements are missing: health checks should not be limited to purely cardiometabolic examinations, but should also identify patients and families at risk of sudden cardiac death and genetic heart disease.
Filed in German · English published by the European Commission
ARVC-Selbsthilfe e.V. Germany warmly welcomes the Safe Hearts Plan and the planned Cardiometric Health Checks. However, in our view, important elements are missing: health checks should not be limited to purely cardiometabolic examinations, but should also identify patients and families at risk of sudden cardiac death and genetic heart disease.
Filed in German · English published by the European Commission
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Turns up on the same files
Organizations that also filed on at least two of the same consultations. A shared interest in the same dossiers, not evidence of coordination, and we do not suggest any.
Showing 5 of 12.
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Everything on this page comes from ARVC-Selbsthilfe e.V.’s own submissions to the European Commission. We have added nothing and interpreted nothing. If something is wrong or out of date, email info@policyspeak.com and we will correct it. If you are an individual named in a record, our privacy policy sets out your rights to correction, objection and removal.
Quotes are verbatim from submissions published by the European Commission, trimmed to their opening passage and never summarized by a model. Organizations only, never individuals. Reused under Commission Decision 2011/833/EU; the European Commission is not liable for this reuse.