Published: October 6, 2026

FHEF September 2026 Edition Heart Beat Newsletter

September was a month of action across the FH community, marked by FH Awareness Day, EU Screening Week, and growing momentum for earlier detection and prevention. Discover the latest advocacy updates, research, and opportunities to get involved.

Catch up on the key highlights from the September 2026 edition of Heart Beat:

FH Europe Foundation News:

European Cardiovascular Health Checks Proposal: The European Commission published a proposal recognising FH, Lp(a), triglycerides, family history, and inherited cardiovascular risk.
FH Awareness Day & EU Screening Week: Community events and awareness campaigns across Europe highlighted the importance of early detection and knowing your numbers.
Educational Webinar Series: FHEF and EPHA continue their webinar series on cholesterol, cardiovascular risk, and treatment options.

Ambassadors News:

Together for FH Awareness Day: Ambassadors supported awareness campaigns and shared personal diagnosis stories.
Apheresis Awareness Day: Community members shared experiences of living with and receiving apheresis treatment.

Research & Community Engagement:

PERFECTO & FH-EARLY: Both projects will present research on paediatric FH screening at the Geneva Health Forum 2026.

Network News:

Austria - FHchol Austria: FH Awareness Day activities focused on screening, awareness, and cardiovascular prevention.
China - Homy FH China Patient Network: A new HoFH report and patient workshop highlighted challenges in diagnosis, treatment access, and advocacy.
Czech Republic - ČAKO: FH Week activities promoted awareness and early detection across the country, also supporting EU Screening Week and Know Your Numbers campaign.
Greece - LDL Greece: Community screening and awareness activities marked FH Awareness Day.
Iraq - FH Iraq: Local television outreach promoted awareness of dyslipidaemia and cardiovascular prevention.
Italy - AISC: Awareness initiatives highlighted the importance of early diagnosis and cardiovascular health.
Italy - ANIF: A new HoFH Manifesto calls for earlier diagnosis and better access to care.
Netherlands - LEEFH: New research shares lessons from ten years of FH cascade screening.
Netherlands - Stichting VrouwenHart: Contribution to the EXIT-CVD project and support for the Know Your Numbers campaign.
Switzerland - Familles en Coeur: A new patient organisation launched to support people and families affected by inherited lipid disorders.
Global - Global Heart Hub: 2025 Annual Review highlights growing global cardiovascular patient advocacy.

Partner News:

EURORDIS: Applications are open for the Open Academy Schools 2027 programme.
European Patients' Forum: The first EPF Youth Congress will bring together young patient advocates from across Europe.
EUPATI: The Annual General Meeting focused on bringing patient experience into healthcare decision-making.

News from around the world:

New LDL-C-Lowering Option Approved in Europe: A new oral treatment option for people with hypercholesterolaemia, including HeFH in the EU.

Knowledge Hub:

EPF Recommendations on the EU Biotech Act: EPF calls for stronger patient involvement, equitable access, transparency, and patient safety.
Webinar: European Health Data Space State of Play: An upcoming webinar will explore the implementation of the European Health Data Space and its impact on healthcare and research.
Webinar: Connecting Civil Society Organisations to Advocate for the EU Budget: A webinar will help organisations engage in upcoming EU budget discussions and health funding advocacy.
Patient Expert Training Programme: Further Learning with EUPATI: Applications are open for EUPATI's training programme for patient advocates interested in medicines development and healthcare decision-making.
Podcast: From FH and Lp(a) to Better CVD Prevention: A new podcast series explores FH, Lp(a), community screening, and cardiovascular prevention.
Report: How Does the Public View Personalised Medicine? A new report examines public awareness, perceptions, and access to personalised medicine across Europe.
Findings from the EPF Barometer 2026: New findings highlight ongoing challenges in meaningful patient involvement in health policy.
Lp(a)HORIZON: Lp(a) International Task Force Statement: Experts emphasise that Lp(a) testing and cardiovascular prevention remain important despite recent trial results.