The FH Europe Foundation is delighted to welcome FH Australia as the newest member of our international network of patient organisations dedicated to improving the lives of individuals and families affected by inherited lipid conditions HeFH, HoFH, elevated lipoprotein(a) and FCS. 

FH Australia brings extraordinary strength to the global movement: a lived experience–led, patient-centred organisation deeply embedded within Australia’s national research, clinical leadership, and advocacy landscape. Their commitment to shifting the dial on familial hypercholesterolaemia (FH) and elevated Lp(a) awareness, diagnosis, and access to care strongly aligns with the values and mission of FH Europe Foundation.experience–ledcentred organisation deeply embedded within Australia’s national research, clinical leadership, and advocacy landscape. Their commitment to shifting the dial on FH and Lp(a) awareness, diagnosis, and access to care strongly aligns with the values and mission of FH Europe Foundation. 

FH Australia expressed a clear and compelling motivation for joining the FH Europe Foundation network:

• to become part of the global FH and elevated Lp(a) advocacy movement,
• to strengthen their national efforts with global perspectives and collaborative leverage, and
• to further grow their organisational capability as they expand reach across Australia. 

As a relatively young organisation, they note that they are now “sufficiently mature to enter into this relationship equitably,” reflecting their readiness to engage, contribute, and benefit from the shared expertise within our network. 

Although FH Australia operates outside the geographical scope of Europe, their ethos mirrors our own. They resonate with the spirit of our message “one voice” — not in a geographical sense but in the strength of unified, evidence-based patient advocacy.based patient advocacy 

Their mission to elevate awareness, support, education, and early detection perfectly aligns with FHEF’s overarching goals. Together, we recognise that collaboration across borders accelerates progress for all. 

FH Australia will contribute to the shared international mission by:

• participating in FHEF advocacy and policy initiatives where aligned with their national objectives;
• championing improved testing, diagnosis, and treatment access in Australia;
• aligning with FHEF positions and amplifying them within their sphere of influence; and
• sharing insights grounded in lived experience and embedded clinical partnerships.

They also look forward to having their Ambassadors take part in the Patient Ambassador Education Programme, enriching both the programme and their local community. 

By joining the FHEF Network, FH Australia seeks:

• a deeper connection to global patient advocates;
• enhanced skills in organisational, patient, and government advocacy;
• increased visibility and recognition as Australia’s lived experience peak body; and
• a strong, pan-national relationship with FHEF leadership and fellow member groups national relationship with FHEF leadership and fellow member groups. 

These opportunities will help them amplify their efforts across Australia—a unique environment where vast geography, resource limitations, and uneven awareness pose challenges to reaching undiagnosed families. 

Seeing this as a meaningful, global impact and we are honoured to welcome FH Australia into the FH Europe Foundation Network. Their passion, expertise, and lived experience enrich our collective mission and expand our global reach. Together, we stand stronger in advocating for early detection, equitable diagnosis, and improved treatment access for people living with FH and elevated Lp(a), no matter where they live. 

Welcome, FH Australia—we look forward to shaping the future of patient support and FH advocacy, together. 

 

Prepared by

Elsie (Cindy) Evans,
FH Europe Foundation Ambassador Programme Manager

 

January marked a focused start to 2026, with FH Europe Foundation advancing patient education, research coordination, and policy engagement to turn evidence and strategy into everyday impact.

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

FH Europe Foundation News:

• ESC–EAS Dyslipidaemia Guidelines: Launch of a free three-part webinar series translating guidelines into practical, patient-relevant understanding.
• IHU ICAN (Paris): Cardiometabolic prevention discussions highlighted patient-centred research and the role of FH-EARLY in early prevention.
• Events Calendar 2026: Key awareness days, congresses, and FHEF milestones published to support planning and engagement.
• Rare Disease Day 2026: Preparations underway to amplify patient voices and highlight access and equity challenges in rare diseases.

Ambassador Programme News:

• EURORDIS Black Pearl Awards: FHEF representation at a flagship celebration of rare disease leadership.
• Patient Voice in Education: Ambassadors continued to strengthen patient-centred practice through clinician education.
• Local Knowledge Sharing: Dutch-language webinar on Lp(a) combined expert insights with lived experience.

Research & Community Engagement:

• PERFECTO in the Media: EU cardiovascular prevention and personalised approaches featured on Romanian radio.
• PERFECTO Final Event: High-level European forum confirmed for 27–28 April 2026 in Brussels.
• FH-EARLY General Assembly: Partners met in Lisbon to review progress and align next steps.
• Safe Hearts Plan Statement: FH-EARLY and PERFECTO welcomed the EU framework and stressed the need for implementation.

Network News:

• Austria: FHchol Austria joined the GoRed campaign and co-organised an FH Festsymposium.
• China: Expansion of FH registries, patient leadership programmes, and national care pathways.
• Czech Republic: New Lp(a) resources and preventive check-ups led to a rapid rise in testing.
• Netherlands: Stichting VrouwenHart marked its 5-year anniversary.
• United Kingdom: Action FCS reminds about its first patient and carer event.
• Global: Global Heart Hub shared 2025 highlights.

Partner News:

• Cyprus EU Policy Event: Focus on AI, digital transformation, and cardiovascular health plans.
• EACH Summit Report: Key outcomes supporting Safe Hearts Plan implementation published.
• BBMRI-ERIC Webinar: Upcoming session on patient and public involvement in biobanking.
• EPF Webinar: Reflections on one year of EU HTA and the patient role.

News from around the World:

• Croatia: Community screening and awareness initiatives promoted early detection.
• Switzerland: CATCH study advanced family-based screening aligned with EU prevention efforts.

Knowledge Hub:

• Rare Diseases at WHO: Advocacy continued for concrete next steps on a Global Action Plan.

Events:

• February: Heart Month (UK & USA)
• 4 February: World Cancer Day
• 24 February: EURORDIS Black Pearl Awards – Brussels & online
• 28 February: Rare Disease Day
• 24 March: Lp(a) Awareness Day
• 27–28 April: PERFECTO Final Event – Brussels & online

Discover the key awareness days and events shaping the year ahead. Our colour-coded calendar highlights major campaigns and initiatives where your involvement matters most, along with relevant awareness moments and health-focused days worth knowing about. The calendar will be updated regularly as new events and opportunities arise.

Open and download the 2026 Awareness Days and Events Calendar.

Explore, engage, and help us make 2026 a year of meaningful action and shared impact.

A patient-focused 3-part webinar series

Clinical guidelines play a powerful role in shaping how dyslipidaemia is diagnosed and treated. Yet for many patients, caregivers, and advocates, these documents can feel complex or difficult to translate into everyday care. 

To bridge this gap, the FH Europe Foundation is launching a three-part webinar series in February 2026 “From Evidence to Everyday Life: Understanding the ESC–EAS Dyslipidaemia Guidelines”. 

This free webinar trilogy is designed to empower patients, caregivers, and patient advocates with a clear, accessible understanding of how dyslipidaemia guidelines are developed, what they recommend, and how they can be used to support informed, shared decision-making in clinical care. 

Why this webinar trilogy matters 

The ESC–EAS Dyslipidaemia Management Guidelines, developed by the European Atherosclerosis Society (EAS) and the European Society of Cardiology (ESC), influence cardiovascular care across Europe and beyond. They help guide decisions on risk assessment, lipid level targets, lifestyle interventions, and medical treatments.

This webinar trilogy will focus on:

• How guidelines are developed
• What the 2019 guidelines recommend
• What has changed in the 2025 focused update
• How patients can use guidelines appropriately—without replacing individual medical advice

Webinar format

All three sessions will have the same patient-friendly format:

• 30-minute expert presentations
• 15-minute moderated discussion and live Q&A
• Clear, jargon-free explanations
• Strong patient representation

Who should attend?

This webinar trilogy is designed for:

• People living with dyslipidaemias: individuals with HeFH, HoFH, elevated Lp(a) or FCS 
• Caregivers and family members
• Patient advocates and community leaders

Webinar 1 

Behind the Guidelines: How Medical Recommendations Are Built – and Why They Matter to Patients 

📅 12 February 2026 | 6:00 pm CET 👉 Register here 

This first webinar explains how European medical guidelines are developed, how evidence is assessed, and how transparency and independence are ensured. It also explores how patients can use guidelines responsibly in real life.

Key topics include:

• What clinical guidelines are—and how they differ from individual medical advice
• Collaboration between ESC and EAS
• Differences between European and national guidelines
• The role of evidence, expert panels, and patients
• Conflict of interest management and industry safeguards
• How long guideline development and updates take
• Dos and don’ts of guideline use in everyday care

Speakers

• Prof. Børge Nordestgaard, Copenhagen University Hospital and EAS President (Denmark)
• Prof. Albert Wiegman, Amsterdam UMC, and FH Europe Foundation Trustee (Netherlands)
• Patient representative: Elsie Evans, Ambassador Programme Project Manager, FH Europe Foundation (United Kingdom/South Africa)
• Moderated by Magdalena Daccord, Chief Executive Officer, FH Europe Foundation (Switzerland/Poland)

Webinar 2 

The 2019 ESC–EAS Dyslipidaemia Guidelines Explained: What They Mean for Patients 

📅 19 February 2026 | 6:00 pm CET 👉 Register here 

This session provides a patient-friendly explanation of the 2019 ESC–EAS Dyslipidaemia Guidelines, including their rationale, key recommendations, and challenges in real-world implementation.

Key topics include:

• Why dyslipidaemia guidelines were needed in 2019
• Who the guidelines apply to (risk groups, familial hypercholesterolaemia, secondary prevention)
• LDL-C targets and cardiovascular risk stratification
• Lifestyle and pharmacological therapies
• Implementation gaps and access challenges
• Patient experiences and barriers
• Recommendations for FCS and HoFH

Speakers

• Dr. Julia Brandts, University Hospital Aachen (Germany)
• Dr. Antonio Gallo, La Pitié-Salpêtrière Hospital, AP-HP (France)
• Patient representative: Neeraja Venu (Germany/India)
• Moderated by Dr. Marina Leroy, Scientific Communications Manager, FH Europe Foundation (Switzerland/France)

Webinar 3 

What’s New in 2025? Understanding the Latest ESC–EAS Dyslipidaemia Guidelines Focused Update 

📅 26 February 2026 | 6:00 pm CET 👉 Register here 

The final webinar explains what has changed in the 2025 focused update of the ESC–EAS Dyslipidaemia Guidelines, why these changes were made, and what they mean for patients now and in the future.

Key topics include:

• Why a focused update was required
• New evidence influencing the 2025 recommendations
• Key changes compared with the 2019 guidelines
• Implications for patients already receiving treatment
• Emerging therapies and future directions

Speakers

• Prof. Jeanine Roeters van Lennep, Professor of Cardiovascular Prevention, Erasmus MC (Netherlands)
• Prof. Florian Kronenberg, Head of the Institute of Genetic Epidemiology at the Medical University of Innsbruck (Austria)
• Patient representative: Helga Davidson (United Kingdom)
• Moderated by Elsie Evans, Ambassador Programme Project Manager, FH Europe Foundation (United Kingdom/South Africa)