May was a month of strong global engagement and policy momentum across our community, with key milestones at the World Heart Summit, World Health Assembly, and EAS Congress reinforcing the importance of early detection and prevention.
Looking ahead, growing EU policy discussions and continued collaboration across research, advocacy, and patient engagement signal an important period for advancing recognition of inherited lipid disorders and strengthening cardiovascular health systems.
Catch up on the key highlights from the May 2026 edition of Heart Beat:
FH Europe Foundation News:
- EU Call for Evidence on Cardiovascular Health Checks: FHEF submission and strong community mobilisation
- World Heart Summit: Bringing the patient voice to global cardiovascular discussions
- World Health Assembly (WHA79): Advancing prevention and early detection on the global stage
- EAS Paediatric FH Symposium: Focus on early detection and management in children
- EAS 2026 Congress: Strengthening science, policy, and patient partnerships
- Lp(a) International Task Force: Moving from awareness to implementation
Ambassador Programme News:
- Elsie Evans at EU Safe Hearts dialogue: Advocating for equity and patient-centred care
- Lena-Rosa Hanauer at Europe Biobank Week: Young patient voice in research discussions
- Patsy Petrie shares her FH journey on the Pioneering Patient Podcast
Research & Community Engagement:
- PERFECTO Capacity Building Workshop in Cyprus: Strengthening knowledge on FH screening and prevention
- PerMed FH Consortium meeting: Advancing precision medicine and genetic research
- FH-EARLY survey: Capturing patient experiences to improve care and support
Network News:
- China: FH China launches national survey on economic burden of HoFH treatment
- Italy: AISC announces cardiovascular prevention day in Rome
- Sweden: FH Sweden marks 10 years of progress in national FH care
- NEW: FH Iraq joins the FHEF Network
Partner News:
- EURORDFIS:Upcoming mental health activities
- Health Technology Assessment International: Lp(a) ITF joining the HTAi Annual Meeting in Istanbul
News from around the World:
- Croatia: “Run for Health” promotes prevention and healthy lifestyles among families
- UK: Genetic Alliance UK’s Future for Rare campaign calls for improved care for rare conditions
Knowledge Hub:
- EAS consensus statements: Advancing lifelong cardiovascular prevention and lipid care
- EU webinar: Youth engagement in cardiovascular prevention – registration open
- REMEDi4ALL Bootcamp: Training opportunity for patient representatives
Events:
- 2–4 June: PEOF 2026 Global Gathering
- 3–4 June: European Conference on Rare Diseases (ECRD 2026)
- 5 June: World Environment Day
- 8–10 June: HTAi 2026 Annual Meeting
- 28–31 August: ESC Congress 2026
