Rare Disease Day is a global moment to highlight the realities faced by people living with rare conditions, from delayed diagnosis to limited treatment options and unequal access to care. For many patients, the challenge is not only the disease itself, but also navigating healthcare systems, finding specialists, and gaining access to life-saving therapies. In … Continue reading My life with HoFH - Joanna Kacprzak
Rare Disease Day shines a light on the everyday realities of people living with rare conditions—including the long search for answers, the impact of delayed diagnosis, and the importance of access to specialised care and effective treatments. In this interview, Manfred shares his experience living with familial chylomicronaemia syndrome (FCS), a rare genetic disorder that … Continue reading My life with FCS - Manfred Huelber
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 … Continue reading Reflecting on 2025: Key Milestones for Our Community
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 … Continue reading New network member - FH Australia
