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 than another working group. It is a significant step towards ensuring that the voices of people living with rare conditions, including homozygous familial hypercholesterolaemia (HoFH) and familial chylomicronaemia syndrome (FCS), are embedded in the policies that shape their care, treatment, and future. The Task Force has a clear and ambitious purpose: to contribute to the development of a European Blueprint for Rare Diseases. This Blueprint will serve as a multi-stakeholder framework designed to guide future action at both European and global levels. Its outcomes are expected to inform:

This positioning is critical. For years, the rare disease community has called for stronger, more coordinated policy action. While national plans have made progress, there remains fragmentation across countries, inconsistencies in care, and unequal access to diagnosis and treatment. The Blueprint—and the Task Force behind it—offers a chance to move from patchwork progress to aligned strategy. Inherited lipid conditions such as HoFH and FCS are often under-recognised in the rare disease space; it is still invisible and does not fit in the typical box. Initiatives like this ensure that:

By participating in this Task Force, FH Europe Foundation is helping to ensure that the realities of our community—early screening needs, family-based care, lifelong management—are reflected in wider rare disease discussions. However, participation alone is not enough. A critical question remains: Will this Task Force deliver meaningful influence, or risk becoming another consultative exercise? There is growing recognition across European health policy that patient involvement must go beyond “a seat at the table”. True engagement means:

The strength of this initiative will depend on how well it translates lived experience into actionable policy recommendations—and whether institutions are ready to act on them. The creation of a European Blueprint is a major opportunity, but it also comes with challenges that must be acknowledged:

For FH Europe Foundation, this means continuing not only to contribute to the discussion, but to champion the needs of our community—helping ensure that commitments made at European level translate into tangible improvements in people's lives.

Together with EURORDIS, RDI, and partners across the rare disease community, we remain dedicated to driving meaningful change. Central to this effort is ensuring that the voices of people living with HoFH, FCS, and other inherited lipid disorders, as well as their families, are not only heard but reflected in concrete actions and policies.

By bringing forward lived experiences, sharing evidence and insights from our key initiatives and EU-funded projects, and advocating for practical, measurable solutions, we aim to advance earlier detection, more effective prevention, and greater equity in care across Europe.

The establishment of the European Regional Task Force marks an important milestone—but it is only the beginning. The real measure of success will be whether this work leads to:

We will continue to engage actively in this process and keep our community informed as the Blueprint develops.

To learn more about the initiative, visit the EURORDIS website: Developing a European Blueprint for Rare Diseases: How this work will unfold - EURORDIS-Rare Diseases Europe

Together, we can ensure that European and global policies reflect the realities—and the needs—of those living with rare conditions.