October was a month of meaningful connection, elevated advocacy and cross-community momentum for the FH Europe Foundation. Representing patient voices at major conferences, launching awareness drives and advancing research equity, the organisation continued to advance cardiovascular prevention and rare lipid disorder care.
Catch up on the key highlights from the October 2025 edition of the Heart Beat newsletter:
FH Europe Foundation News:
- World Orphan Drug Congress Europe (Amsterdam): FHEF hosted its first booth, showcasing projects like FH-EARLY, PerMed FH and PERFECTO-FH.
- FCS Awareness Day (7 Nov): Check the dedicated awareness Day website with toolkits and take part in the 10 g Fat Challenge to raise awareness of Familial Chylomicronaemia Syndrome.
- World Mental Health Day: Spotlight on emotional well-being and its link to inherited lipid disorders.
- World Stroke Day: Raising awareness about high cholesterol and lipoprotein(a) (Lp(a)) being hidden stroke risks.
- Run4FH Europe (Zagreb, 16 Nov): Preparations underway for the 5 km awareness run at the Annual Network Meeting in Zagreb.
Ambassador Programme News
- New Certified Cohort 2025-26: Welcoming Ambassadors from diverse fields to strengthen patient advocacy.
- GCNLF Summit: Ambassador Marc Rijken shared patient insights with cardiovascular nursing leaders.
- EP PerMed Podcast (Prague): Ambassadors join experts to discuss personalised medicine in lipid disorders.
Research & Community Engagement:
- FH-EARLY Meeting: Partners advanced communication and patient engagement goals.
- PERFECTO-FH Webinar: Addressed genetic testing equity for underrepresented communities.
- EP PerMed Survey: Gathering European views on personalised medicine awareness.
Network News & Partner News:
- Luxembourg: Launching a national FH screening programme for children.
- Hungary: SZÍVSN hosted a dynamic World Heart Day event featuring astronauts.
- Italy: AISC’s National Congress focused on new community-care models.
- Global Heart Hub: Unite Summit (Dublin) to highlight women’s cardiovascular health.
- EACH Summit (Brussels, 10-11 Dec): FHEF joins sessions on equity and patient voice.
- ESC Webinar (31 Oct): Lipoprotein(a): Current Role and Future Perspectives.
- EURORDIS Survey: Gathering rare disease community insights across 25 languages.
News from around the World:
- China: Launch of the first FH Conference & Psychosocial Report on HoFH—focusing on mental well-being and patient support.
Knowledge Hub:
- EUPATI Training (18 November): On patient involvement in EU HTA.
- New ICD-10-CM Code (E78.010): Dedicated code for Homozygous FH is now active.
- The Lancet Review: Advances in genetic testing and emerging FH therapies.
Important Dates you don´t want to miss:
- 7 November: FCS Awareness Day
- 14-16 November: FH Europe Foundation Annual Meeting, Zagreb
- 18 November: EUPATI Training on EU HTAR
- 26-27 November: EPF Congress, Brussels
- 5-6 December: 2025 Global Forum, Glasgow
- 10-11 December: EACH Cardiovascular Health Summit, Brussels
