February was a month of remembrance, advocacy, and renewed momentum across our community. From Rare Disease Day to European policy engagement and research collaboration, we continued advancing earlier detection, equitable care, and stronger patient representation in FH and rare lipid disorders. Catch up on the key highlights from the February 2026 edition of Heart Beat: … Continue reading FHEF February 2026 Edition Heart Beat Newsletter
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
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 … Continue reading Remembering Véronique Lemaître, Founder of ANHET.f
