As summer winds down, momentum is just ramping up: with back-to-school season and major events on the horizon, it’s the perfect time to reconnect, share insights, and drive collective impact.
Explore the highlights from FH Europe's end of Summer 2025 Heart Beat newsletter to catch up on the latest news and events in the world of cardiovascular health:
- FH Europe Foundation News:
- Save the date and register for the high-Level EU Parliament Event (25 September): Cardiovascular Prevention as the Cornerstone of a Competitive Europe
- FH Awareness Day (24 September): Celebrating a decade of progress in detecting and treating FH; explore resources and the toolkit.
- EU Cardiovascular Health Plan Consultation: Open until 15 Sept. Your voice helps ensure inherited lipid disorders are recognised in EU policy.
- ESC Congress 2025 (Madrid): FHEF participated actively—celebrating the updated ESC/EAS guidelines now including Lp(a) in CV risk assessment, and contributing policy perspectives through high-level forums.
- Global interest of the landmark Lp(a) Cost-Effectiveness Study: Published in Atherosclerosis, the study highlights routine Lp(a) testing and is gaining global attention.
- Annual Network Meeting 2025 (14–16 November): Taking place in Zagreb, Croatia, the hybrid event will gather FH community leaders for science, strategy, and community-building—including workshops, network events, and a special FH Run.
- APO Summer School (27 Aug): CEO Magdalena Daccord reflected on FHEF’s 10-year journey and advocacy advances in Prague.
- Apheresis Awareness Day (16 Sept): Raising awareness about this vital therapy for HoFH, elevated Lp(a), and FCS patients.
- World Patient Safety Day (17 Sept): Emphasising early diagnosis of inherited lipid conditions to ensure patient safety from childhood; projects like PERFECTO and FH-EARLY are leading prevention efforts.
- New Team Members: Welcome to Kitti Almer (Policy & Advocacy Manager) and Marina Leroy (Communications Manager), enhancing advocacy and outreach capacity.
Ambassador Programme News
- Launch of the Patient Ambassador Working Group: with Co-Chairs Madelina Iamandei and Chyrel Lichaa, supported by Lena-Rosa Hanauer.
- Monthly Virtual Workshops: A new learning series for Ambassadors and network leaders—covering topics like ethical engagement and tailored communication models.
- Certified Ambassador Programme (Cohort 2026): Continuing the inaugural model with in-person training in Romania and certification—launch details coming soon.
News from our Research Projects
- FH-EARLY Project: Expert Patient Panel launched on 31 Aug, with ongoing need for Portuguese and Turkish representatives. Website launched in July.
- PERFECTO in Romania: June efforts in Argeș County included community health festivals, cholesterol and Lp(a) testing, and groundwork for a personalised communication campaign in Lerești.
Network & Partner News:
- Croí Ireland: Rural community health checks revealed widespread undiagnosed elevated cholesterol and high blood pressure—highlighting the need for national FH strategies.
- Global Heart Hub Survey: Participate by 30 Sept in shaping patient involvement in Health Technology Assessment processes.
- World Heart Federation – 25th World Heart Day (29 Sept): Celebrated with the “Don’t Miss a Beat” campaign—25-day Keep the Beat Challenge encourages daily movement for heart health.
- EPF Congress (26–27 Nov): A forum to envision resilient, inclusive, patient-centric healthcare systems—registration open.
- EURORDIS Drug Repurposing Pilot: EMA pilot highlights rare disease projects; Black Pearl Awards nominations (until 10 Sept) now welcome.
- Ireland’s Rare Disease Strategy: New national strategy outlines key recommendations—inclusive healthcare, registries, and ERN integration—for 300,000 people with rare diseases.
For and from our Ambassadors:
- NGO AI Workshop (10 Sept): Free online session on safe AI use for NGOs. A workshop recommended by our Patient Ambassadors.
Important dates you won’t want to miss!
Read the Full Newsletter.
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