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ARVC-Selbsthilfe e.V.

Eine Patientenorganisation für die seltene genetische Herzerkrankung ARVC/ACM, arrhythmogene (rechtsventrikuläre) Kardiomyopathie.Wir bieten Unterstützung und Information für ARVC-Patienten und ihre Familien durch die Organisation von Online- und Präsenzveranstaltungen, persönliche Beratung, Vernetzung mit ARVC-Spezialisten und Forschungseinrichtungen auf inter- und nationaler Ebene.

Lobbying Activity

Response to EU’s next long-term budget (MFF) – EU funding for competitiveness

12 Nov 2025

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). ERNs are a proven success story, central to the EU's health strategy for the estimated 30 million patients with rare and complex diseases. However, the omission of explicit mention of ERNs or rare and complex diseases in the ECF proposal is a critical oversight. I, as chair of the German Patient Organisation ARVC-Selbsthilfe e.V. and as chair of the European patient advocacy group of ERN GUARD-Heart urge the Commission to explicitly include and fund ERNs within the ECF, as they are a unique, essential infrastructure that: Boosts Competitiveness: ERNs advance innovative health technologies, research (via disease registries), and high-level training (ERN Academies), directly contributing to Europes global edge in specialized health and biotech. Strengthens Health Systems: ERNs ensure equitable access to highly specialized care across borders through tools like the Clinical Patient Management System (CPMS) and by developing in cooperation with scientific societies standardized clinical guidelines and care pathways. Ensures Cohesion: Dedicated, sustained funding for ERNs will support their crucial integration into national healthcare systems via national coordination hubs, guaranteeing that specialized knowledge benefits all citizens, regardless of the rarity of their condition. Ensures optimal patient care and support: patients with rare diseases are underdiagnosed, underrecognised and undertreated. ERNs play an essential role in shortening diagnostic odysseys, assessing risks, and providing rare disease patients with the best possible treatments. Including ERNs prominently will solidify the MFF's commitment to European competitiveness, resilience and solidarity. For the rare disease patient community, the ERNs have a vital, life-saving role. It is of utmost importance for us that the work of the ERNs will continue.
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Meeting with Tiemo Wölken (Member of the European Parliament)

17 Jan 2024 · Herz-Kreislauf-Erkrankungen

Meeting with Peter Liese (Member of the European Parliament)

15 Dec 2023 · Austausch Cardiovascular Health