Catch up on the key highlights from the September 2025 edition of the Heart Beat newsletter:
FH Europe Foundation News:
- A Decade of Advocacy at the European Parliament (25 Sept): FHEF marked 10 years of patient-led progress with the event “Cardiovascular Prevention as the Cornerstone of a Competitive Europe”, featuring powerful Ambassador testimonies and strong political support from MEPs Romana Jerkovič and Tomislav Sokol.
- Meeting with EU Health Commissioner Olivér Várhelyi: Discussions in Brussels underlined the importance of early detection and equitable access to care within the upcoming EU Cardiovascular Health Plan.
- FHEF Response to the EU CVH Plan Consultation: The Foundation’s submission stresses the need to prioritise inherited lipid disorders in Europe’s cardiovascular strategy.
- FH Awareness Day 2025 – A Global Success: The community united across Europe and beyond, amplifying awareness through events, partnerships, and social media campaigns.
- Upcoming Events: Join FHEF at the World Orphan Drug Congress Europe (27–29 Oct, Amsterdam) and the 2025 Global Forum (4–5 Dec, Glasgow).
- Annual Network Meeting 2025 (14–16 Nov, Zagreb): Preparations are underway for this flagship gathering of leaders, Ambassadors, clinicians, and researchers.
Ambassador Programme News:
- Ambassadors in Action: From webinars and international panels to social media campaigns, Ambassadors were the driving force of FH Awareness Day 2025.
- Global Representation: Michelle Watts and Scott Reavis will speak at the CVCT Forum 2025 (Washington DC), while Lp(a) Ambassador Marc Rijken joins the EACH Summit (10–11 Dec, Brussels).
- Youth Advocacy at the EU Level: FHEF’s Young Ambassadors met EU Health officials to ensure youth voices shape the new Cardiovascular Health Plan.
News from our Research Projects:
- PerMedFH Project: The new website (www.permedfh.eu) launched, advancing research on personalised FH prevention.
- PERFECTO Project in Bulgaria: Youth-led awareness campaigns and art exhibitions celebrated FH Awareness and World Heart Day.
- FH-EARLY Project: Gaining international recognition with presentations across Europe and the U.S.—plus installation of the Gene Titan genotyping system in Portugal for faster FH diagnosis.
Network & Partner News:
- Austria: FHchol Austria announces an FCS-friendly cooking course (7 Nov, Vienna).
- France: Anhet.f achieves a national breakthrough—FH screening officially added to the HAS 2025–26 agenda.
- Ireland: Croí’s rural health checks reveal high cholesterol risks, underscoring the need for a national FH screening strategy.
- Global Heart Hub: Celebrates five years of uniting cardiovascular patient voices worldwide.
- ESC Webinar (31 Oct): “Lipoprotein(a): Current Role and Future Perspectives in Cardiovascular Medicine.”
- ESO Event (14 Oct): “Closing the Gaps in Stroke Care” at the European Parliament.
- EURORDIS: Applications open for 2026 Open Academy trainings; new Rare Barometer Survey now live.
- World Heart Federation: 25th anniversary of World Heart Day celebrated with the “Don’t Miss a Beat” campaign.
News from around the World:
- China: FH China hosts its first-ever patient meeting on FH Awareness Day—strengthening global community ties.
- Croatia: Rare Disease Day Symposium drives recognition of 19 September as National Rare Disease Day
Knowledge Hub:
- Patient Engagement Open Forum Workshop (28 Oct): “Rules of Engagement: Navigating Codes of Conduct for Patient Engagement (II)”.
Important dates you won’t want to miss!
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