July was a month of preparation, advocacy, and momentum across the FH Europe Foundation network, with major developments in screening policy, rare disease recognition, precision medicine, and emerging treatment options. As the community prepares for FH Awareness Day, EU Screening Week, and key international events, efforts continue to advance early detection, patient empowerment, and equitable access to care for inherited lipid disorders.
Catch up on the key highlights from the July 2026 edition of Heart Beat:
FH Europe Foundation News:
- EU Screening Week 2026: Encouraging organisations across Europe to participate in the first EU Screening Week and promote early screening for FH and elevated Lp(a).
- FH Awareness Day Preparations: Upcoming community calls to support engagement and campaign planning ahead of 24 September.
- ESC Congress 2026: FH Europe Foundation will participate in Munich, but also share key congress highlights, patient perspectives, and updates from the Lp(a) International Taskforce.
- World Orphan Drug Congress Europe: Visit our booth, join our sessions and benefit from complimentary congress passes.
- EURORDIS Black Pearl Awards 2027: Nominations still open for rare disease champions and two FH Europe Foundation Ambassadors representing the HoFH and FCS communities.
Ambassadors News:
- Travel Well with Confidence Campaign: This summer, Ambassadors are sharing practical advice and personal experiences to help people with inherited lipid disorders travel safely and confidently.
- International Self-Care Day: Ambassadors and community members highlighted strategies for supporting physical and mental wellbeing while living with inherited lipid conditions.
Research & Community Engagement:
- PerMed FH: A new review highlights the project's contribution to advancing precision medicine in FH through improved genetic testing, variant interpretation, and international collaboration, supporting more accurate diagnoses and personalised care.
Network News:
- Belgium - Belgian Cardiac League: Second Cardiac Patient Day brings together patients and experts to discuss cardiovascular health, mental wellbeing, and patient experiences.
- Belgium - HoFH Patient Story Podcast: Marjorie shares her experience living with HoFH and underscores the importance of timely diagnosis and access to treatment.
- China - Homy FH China Patient Network: New report reveals the challenges faced by people living with HoFH, including diagnostic delays, treatment gaps, and financial burdens.
- China - National Recognition: Homy FH China receives the Qiming Zhuguang Award for its contributions to FH research, patient advocacy, and care.
- France - Anhet.f: Landmark legislation introduces universal FH screening from age six as part of a national prevention strategy.
- Netherlands - Stichting LEEFH: Records its highest-ever number of FH diagnoses, with nearly half of newly identified relatives under 18 years old.
- Netherlands - Stichting LEEFH: New patient-led social media initiatives and the appointment of Prof. Kees Hovingh as Medical Advisor strengthen engagement and expertise.
Partner News:
- World Heart Federation: New Cardiac Rehabilitation Roadmap promotes lifelong cardiovascular prevention, patient-centred care, and stronger healthcare pathways.
News from around the World:
- Sweden: Adoption of the first National Strategy for Rare Health Conditions (2026-2030) to strengthen rare disease care, coordination, and screening.
- Austria: Publication of the Lipid Consensus 2026, providing evidence-based guidance on prevention, FH screening, and lipid disorder management.
Knowledge Hub:
- Emerging Lipid-Lowering Therapies: EMA recommends lerodalcibep, obicetrapib, and obicetrapib/ezetimibe, while the FDA approves enlicitide, the first oral PCSK9 inhibitor.
- Patient Advocacy Academy: Educational opportunities continue to support patient advocates in building leadership and advocacy skills.
- European Patients’ Forum: Launch of the EPF Barometer highlights progress and ongoing challenges in patient involvement in health policy across Europe.
Events:
- 28-31 August: ESC Congress 2026, European Society of Cardiology (ESC), Munich, Germany
- 15 September: Apheresis Awareness Day
- 17 September: World Patient Safety Day, World Health Organization (WHO)
- 24 September: FH Awareness Day
- 29 September: World Heart Day, World Heart Federation
- 29 September-4 October: EU Screening Week 2026
- 27-28 October: World Orphan Drug Congress, Amsterdam, The Netherlands
- 6 November: FCS Awareness Day
- 6-8 November: FHEF Annual Network Meeting, Dublin, Ireland
