June was a month of advocacy, collaboration, and progress across the FH Europe Foundation network, with important developments in EU policy, rare disease advocacy, research, and patient engagement. As summer begins, our community continues to drive forward early detection, prevention, and equitable care for inherited lipid disorders.
Catch up on the key highlights from the June 2026 edition of Heart Beat:
FH Europe Foundation News:
- Early Screening for Inherited Lipid Disorders: Continued advocacy for inclusion in future EU Cardiovascular Health Checks.
- HTAi Annual Meeting 2026: Contributing the patient perspective to discussions on health technology assessment and prevention.
- HoFH Webinar Trilogy: Exploring diagnosis, treatment advances, and lived experience.
- Lp(a) Update 2026: Advancing collaboration on testing, prevention, and implementation.
- Rare Disease Advocacy: FHEF joins Rare Diseases International and the European Regional Task Force on Rare Diseases.
- FHEF Annual Network Meeting in Dublin: Registration details to be announced soon.
Ambassador Programme News:
- Ambassadors at Key Events: Bringing the patient voice to international conferences, meetings, and webinars.
Research & Community Engagement:
- PERFECTO at JACARDI Learning Session: Strengthening collaboration on health literacy, prevention, and patient empowerment.
- PERFECTO Project Legacy: Advancing paediatric FH screening across Europe.
- FH-EARLY at the LSEDL Annual Congress: Raising awareness of early FH identification and management.
Network News:
- Spain: SAFEHEART study highlights the long-term benefits of early FH treatment.
- Latvia: ParSirdi.lv supports innovation in FH diagnosis, awareness, and patient engagement.
- Spain: Corazón Sin Fronteras webinar explores women and cholesterol care.
- Singapore: FH Connect 2026 brings patients, families, and healthcare professionals together.
- Czech Republic: ČAKO promotes patient education and community-based prevention.
- France: Anhet.f webinar focuses on FH and Lp(a) diagnosis and management.
Partner News:
- EURORDIS: New evidence highlights the mental health impact of living with a rare disease.
- EURORDIS: Calling for stronger and more coordinated newborn screening programmes across Europe.
- Global Heart Hub: New insights into women’s experiences of cardiovascular care.
- BBMRI-ERIC: Supporting implementation of the European Health Data Space. Knowledge Hub
Knowledge Hub:
- EAS Paediatric FH Symposium Recordings: Expert perspectives on screening, diagnosis, and treatment.
- EUPATI Patient Expert Training Programme: Building patient advocacy and research expertise.
- Global Heart Hub Webinar: Exploring access to cardiac rehabilitation and long-term support.
- EUCAPA HTA Training: Strengthening patient involvement in health technology assessment.
- EMA Approval of Plozasiran: Expanding treatment options for people living with FCS.
Events:
- 28-31 August: ESC Congress 2026, European Society of Cardiology (ESC), Munich, Germany
- 15 September: Apheresis Awareness Day
- 24 September: FH Awareness Day
- 27-28 October: World Orphan Drug Congress, Amsterdam, The Netherlands
- 29 September: World Heart Day, World Heart Federation
- 6 November: FCS Awareness Day
- 6-8 November: FHEF Annual Network Meeting, Dublin, Ireland
