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June 29, 2026

Improving Mental Health in the Rare Disease Community: A call to action for integrated, compassionate care

Across Europe, more than 30 million people live with a rare disease. For many, the challenges extend far beyond physical symptoms—impacting emotional well-being, family life, and everyday resilience. A recent EURORDIS Rare Barometer survey shines a spotlight on an often-overlooked reality: the mental health burden within the rare disease community. What the data tells us: […]

June 20, 2026

FHEF Joins RDI to Strengthen the Voice of People Living with Rare Inherited Lipid conditions

Rare inherited lipid disorders may affect relatively few people, but the challenges they present are shared by millions of people living with rare diseases around the world. Addressing them requires collective action, global collaboration, and a strong patient voice. A new milestone that strengthens our voice for people living with homozygous familial hypercholesterolaemia (HoFH), familial […]

June 15, 2026

HTAi 2026: Shaping Health Systems with Patients at the Centre

From Evidence to Impact: FH Europe Foundation Brings the Voice of Patients to the Global HTA Community Health Technology Assessment (HTA) may sound like a highly technical discipline, but its influence reaches far beyond academic reports and economic models. Every day, HTA helps determine which medicines, diagnostics, screening programmes and healthcare services become available to […]

June 2, 2026

FHEF is part of the European Regional Task Force on Rare Diseases

At FH Europe Foundation, we believe that meaningful change begins by listening—truly listening—to the communities we represent. That is why we are proud to be part of an important new initiative led by EURORDIS, in collaboration with Rare Diseases International (RDI): the establishment of a European Regional Task Force on Rare Diseases. This is more […]

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