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:
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.