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A European Action Plan on Rare Diseases Is a Necessity, Not an Option – EPODIN
EPODIN/LinkedIn
Feb 24, 2026, 14:01

A European Action Plan on Rare Diseases Is a Necessity, Not an Option – EPODIN

European Patients Organization for Dysimmune and Inflammatory Neuropathies (EPODIN) shared a post on LinkedIn:

“A European Action Plan on Rare Diseases: a necessity, not an option

Between 27 and 36 million people in the European Union live with a rare disease.
95% of rare diseases lack of approved therapy.
Diagnostic delays often last years.

  • Access to care and therapies still depends heavily on where a patient lives.
  • In this context, the European Parliament is working on a European Action Plan on Rare Diseases.

 Why does the European level matter?

  • Because rare diseases are, by definition, scattered.
  • Because expertise is limited and unevenly distributed.
  • Because data remain fragmented.
  • Because purely national responses have clear limitations.

European added value is not theoretical. It already exists.

The European Reference Networks (ERNs) are a concrete example:

  • More than 1,600 centres of expertise connected across Europe
  • Virtual cross-border consultations for complex cases
  • Shared clinical expertise
  • Reduced duplication and improved access to specialised care

ERNs demonstrate that when Europe coordinates and structures expertise, patients benefit from more equitable and timely access to highly specialised care.

However, a future Action Plan will only succeed if patient organisations are placed at the heart of the system.
They are not just stakeholders. They are:

  • Identifiers of unmet needs
  • Holders of lived expertise
  • Partners in research and data generation
  • Advocates for equity and non-discrimination

A European rare disease framework is not only about technical coordination.
It is about responding to citizen-driven public health and equity challenges.

Any Action Plan must first and foremost:

  • Address transversal unmet needs
  • Reduce territorial and social inequalities
  • Strengthen structures that already demonstrate clear added value
  • Embed the patient voice structurally, not symbolically

Rare diseases are a medical challenge.
They are also a test for Europe’s commitment to health equity and social cohesion.
The response must be collective, coordinated and ambitious.”

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EPODIN ERNs European patients organization for dysimmune and inflammatory neuropathies Health Hematology Hemostasis Hemostasis News Hemostasis Today Medicine Rare Diseases The European Reference Networks
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