Turning loss into action for Familial Hypercholesterolaemia in France
Véronique Lemaître did not set out to become an advocate. She became one because she understood—through painful personal experience—what happens when familial hypercholesterolaemia (FH) is not diagnosed and treated in time.
A mother first and foremost, Véronique encountered FH within her own family. Cholesterol disorders were known, but poorly understood, inconsistently managed, and too often minimised. Like many families at the time, hers lived with unanswered questions and mixed medical advice.
The sudden loss of her son Baptiste, a second-year medical student who died from a heart attack at a young age, marked a turning point. This preventable tragedy transformed Véronique’s grief into determination: no other family should have to live through what hers had endured.
Building a voice for patients in France
In 2013, Véronique set out to create ANHET.f — the French national patient association dedicated to familial hypercholesterolaemia (FH), and now also elevated lipoprotein (a) Lp(a).
From its earliest days, she worked to structure and develop the organisation, connect patients and families, and engage healthcare professionals. Véronique understood that awareness alone was not enough—systematic screening, early diagnosis, and access to treatment had to become priorities.
Bringing FH to the European stage
Véronique’s commitment quickly extended beyond France.
In 2015, she participated in a call to action at the European Parliament in Brussels, helping to bring FH into European health policy discussions. Her contribution, rooted in lived experience, reinforced a simple but powerful message: FH is a European public-health issue that requires coordinated action.
Listen to Véronique’s call for collective action across Europe to make early screening, awareness, and access to treatment a reality—and to save young people’s lives.
Paris 2018: patients’ stories at the centre
At the FH Europe Annual Network Meeting in Paris in 2018, Véronique once again ensured that patient voices were heard.
She supported the creation and dissemination of ANHET.f’s awareness video—later shared across Europe—designed to make FH visible, understandable, and urgent. The video reflected her conviction, and that of the community she helped build, that early diagnosis saves lives and that real stories can drive real change.
Please listen to Véronique’s message about her son Baptiste—an important reminder for young people not to be misled by this invisible disorder.
Despite language barriers, Véronique worked closely with the FH Europe Foundation, contributing to cross-border collaboration, shared advocacy efforts, and awareness campaigns. She believed deeply in collective action and in the strength of the European FH community.
Photo of Veronique from IWD Awareness Campaign, 2023
Passing the torch, staying engaged
In 2020–2021 (to be confirmed), Véronique chose to hand over the leadership of ANHET.f, becoming Vice-President while supporting a new generation of leaders. It was a thoughtful and generous transition, ensuring continuity for the association she had helped build, while remaining closely involved.
That same spirit guided her decision in 2021, when invited to participate in a high-level technical meeting under the Slovenian Presidency of the Council of the EU. Rather than speaking herself, Véronique proposed that her daughter Charlotte take the floor—giving voice to the next generation and reminding policymakers of the very real human stakes behind FH policies.
Véronique remained a committed, influential, and trusted voice within FH Europe Foundation and had recently been invited to contribute to a new advisory project. Sadly, health complications prevented her from participating
A sudden and unexpected loss
In January 2026, Véronique underwent surgery and appeared to be on the path to recovery. Tragically, only days later, she passed away suddenly, at the age of 64.
Her death came as a profound shock to her family, to ANHET.f, and to the wider FH community across Europe.
A legacy that endures
Véronique Lemaître is remembered as a determined advocate, but also as a woman of generosity, warmth, and deep humanity. Through her work, awareness has grown, screening has advanced, and lives are being protected.
At FH Europe Foundation, we honour her memory by continuing the work she cared about so deeply—ensuring that no family is left unaware, unsupported, or unheard.
As we look back on 2025, we’re proud to share an overview of the significant milestones that shaped the year for our community. This year brought important progress across our core conditions: heterozygous familial hypercholesterolaemia (HeFH), homozygous familial hypercholesterolaemia (HoFH), elevated Lp(a), and familial chylomicronaemia syndrome (FCS).
We’ve compiled a document that tracks the major regulatory updates, clinical trial results, events, and community projects from the past year. It’s designed to provide patients, caregivers, and healthcare professionals with a clear picture of the advances that are moving the field forward. Importantly, the document has been reviewed by leading experts to ensure accuracy and relevance.
What’s Inside
This document highlights the collective efforts of researchers, clinicians, patient advocates, and the broader community that continue to improve outcomes for individuals affected by these conditions.
We invite you to explore the full 2025 milestones document.
📄 Download the 2025 Milestones Document
(This document contains some links directing to external content created by pharmaceutical companies and sharing it does not imply endorsement of any product, treatment, or organisation.)
Prepared by
Dr. Marina Leroy,
FH Europe Foundation Scientific Communications Manager
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:
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:
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:
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: