Rare Liver Diseases take the spotlight at the European Parliament — and LAL-D Patient Organization was there
On Rare Disease Day, our organization had the honour of participating in the launch of the Rare Liver Diseases Policy Position Paper at the European Parliament, represented by Eduardo López, who shared how patient organisations can transform the journey from diagnosis to access to care.
We extend our sincere thanks to ELPA – European Liver Patients’ Association, and to MEP Irena Joveva and MEP Nicolás González Casares for championing this important initiative and ensuring that rare liver diseases are firmly placed at the centre of European health policy.
Eduardo’s intervention highlighted key messages:
• Early diagnosis saves lives. LAL-D shows the urgent need to reduce diagnostic delays across all rare liver diseases.
• Access to proper testing matters. Enzymatic and genetic testing can prevent years of uncertainty.
• Equal access must be a reality. No patient should face barriers because of where they live.
• Patient organisations guide, support, and empower. From navigating tests to emotional support, communities reduce isolation and bring clarity.
• Collaboration accelerates research. Europe needs stronger funding, international cooperation, and interoperable registries that include undiagnosed patients.
This gathering, supported by committed Members of the European Parliament and a united community of scientists, regulators, advocates, and patients, reinforces a clear message:
Rare liver diseases can no longer remain invisible. Europe has listened — and this is only the beginning.
Because at LAL-D Patient Organization, we believe that “rare” must never mean “forgotten.”
