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April 20, 2026

Joint appeal by health communities to Heads of State - keep health high in EU priorities

Joint Statement – Investing in Health for Europe’s Competitiveness, Resilience and Long-Term Growth Amsterdam, 20 April 2026 - The European cardiovascular health and cancer communities have issued a strong appeal to the EU Heads of State and Government to make health investment a sustained priority ahead of their European Council (EUCO) Summit on 23–24 April. The […]

March 31, 2026

FHEF March 2026 Edition Heart Beat Newsletter

March was a month of awareness, collaboration, and forward-looking advocacy across our community. With a strong focus on Lp(a) Awareness Day, policy engagement, and ongoing research initiatives, we continued driving progress toward earlier detection, improved care pathways, and stronger patient voices in FH and rare lipid disorders. Catch up on the key highlights from the […]

March 2, 2026

FHEF February 2026 Edition Heart Beat Newsletter

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: […]

February 26, 2026

My life with HoFH - Joanna Kacprzak

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 […]

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