Latest news

June 30, 2026

PERFECTO: The mission to prevent the preventable continues

On 31 May 2026, the PERFECTO project officially came to an end after 30 months of collaboration dedicated to advancing paediatric screening for Familial Hypercholesterolaemia (FH) across Europe. Coordinated by FH Europe Foundation and co-funded by the EU4Health Programme, PERFECTO was built around a clear public health ambition: to support the early detection of FH in […]

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 […]

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