Published: November 2, 2026

FHEF October 2026 Edition Heart Beat Newsletter

October was a month of connection, advocacy and scientific progress across the FH Europe Foundation community. From patient voices shaping discussions at international conferences to new research, awareness initiatives and preparations for the Annual Network Meeting in Dublin, our network continued to advance patient-centred care and cardiovascular prevention.

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

FH Europe Foundation News:

Annual Network Meeting 2026: The FHEF community will gather in Dublin (6-8 November), bringing together patients, healthcare professionals, researchers and partners to strengthen collaboration and share best practices.
FCS Awareness Day: Activities include a Rare Revolution Magazine social media takeover, patient stories, and a new awareness toolkit to support the community in raising visibility of Familial Chylomicronaemia Syndrome.
World Orphan Drug Congress: FHEF participated in Amsterdam with Ambassadors and representatives highlighting the patient perspective and the economic impact of living with rare diseases.
ProCardio Symposium: FHEF contributed to discussions on cardiovascular, kidney and metabolic health, underlining the role of patient advocacy in policy and prevention.
MOSAIC 2026: FHEF brought the patient perspective to conversations on multidisciplinary research and personalised care.
Lp(a)HORIZON Update: FHEF shared Novartis' letter regarding the discontinuation of the pelacarsen programme and outlined planned activities to support and inform the patient community.

Ambassadors News:

International Lipid School: Seven FHEF Ambassadors shared lived experiences of inherited lipid disorders with healthcare professionals, researchers and students in Split, Croatia.
World Orphan Drug Congress: Ambassadors Margot de Vaan and Marc Rijken represented patient voices at the Amsterdam congress.
EUPATI Achievement: Congratulations to Renate Kaal on completing the EUPATI Patient Expert Training Programme.

Research & Community Engagement:

PerMed FH Symposium: Registration is open for the International Symposium on Personalised Medicine in Familial Hypercholesterolaemia, taking place in Portugal in December.
FH-EARLY & PerMedFH Research Publication: A new study on LDL receptor variant interpretation was published in Atherosclerosis, supporting more accurate genetic diagnosis of FH.
JACARDI General Assembly: Partners shared progress on cardiovascular disease and diabetes initiatives, with a strong focus on prevention, equity and patient self-management.
MCMT-AI Project: FHEF joined a new European research initiative developing AI-powered digital twins to support personalised cardiometabolic care.

Network News:

Austria - FHchol Austria: Celebrated 15 years of patient advocacy, recognising key contributors and highlighting progress in FH awareness and research.
China - Hongmili FH China Patient Network: Promoted patient-centred innovation at the Rare & Boundless Innovation Carnival and launched a HoFH patient documentary project.
Greece - LDL Greece: Shared the patient perspective at a regional conference on cardio-renal-metabolic health.
Iraq - FH Iraq: Raised awareness of dyslipidaemia and cardiovascular prevention through a regional television interview.
Netherlands - Stichting VrouwenHart: Demonstrated the impact of patient-led advocacy and the importance of supporting patient organisations.
United Kingdom - HEART UK: Welcomed John Orchard as the organisation’s new Chief Executive.

Partner News:

European Alliance for Cardiovascular Health (EACH): The “Look Beyond the Usual” campaign encourages healthcare professionals to recognise cardiovascular disease risk in younger people.
Rare Diseases International (RDI): Applications are open for the 2027-2028 Youth Leadership Programme.
World Heart Federation (WHF): Announced its newly elected Board for 2027-2028.

News from around the world:

United Kingdom: MHRA and NICE approvals of plozasiran and olezarsen mark important progress in access to treatments for people living with FCS.
United States: The American Heart Association released new guidance promoting a personalised approach to women's cardiovascular health throughout life.

Knowledge Hub:

PatientView Report: New international research highlights the need for stronger patient involvement in pricing, reimbursement and health technology assessment decisions.
EURORDIS Blueprint for Rare Diseases: A new roadmap outlines 18 priority actions to improve diagnosis, care, research and inclusion for people living with rare diseases.
WHO Global Action Plan on Rare Diseases: Patients and organisations are invited to contribute to upcoming consultations through RDI-led activities.
EURORDIS & EUPATI Training Opportunities: New programmes are available to strengthen patient advocacy skills and involvement in healthcare decisions.
New HoFH Publication: Research led by Elsie Evans highlights the quality-of-life impact and burden of lipoprotein apheresis on people living with HoFH and their caregivers.
PatientAdvocacy.Academy: Final opportunities remain to join the November 2026 training cohort.