Poland sets sights on tackling postcode lottery in rare disease care

Poland sets sights on tackling postcode lottery in rare disease care

The EU has committed €77 million to strengthen European Reference Networks (ERNs) for rare disease patients.

CDMX.- Representative Hilda Magdalena Licerio Valdés of the Green Ecological Party of Mexico (PVEM) promotes an initiative to reform and add various provisions of the General Health Law, with the aim of creating a National Registry of Rare Diseases.The initiative that was sent to the Health Commission states that it will be the responsibility of the General Health Council to prepare, update and disseminate in the Official Journal of the Federati…

An EU Action Plan on rare diseases

A high-level conference convened in Warsaw on April 10, 2025, under the Polish Presidency of the Council of the European Union, focused on the need for a comprehensive policy framework on rare diseases. Experts and policymakers discussed the future direction of rare disease policy during the “Towards an EU Action Plan on Rare Diseases” event. ‘Rare diseases affect millions of people in the EU, and only 6% of them have treatment options, and not …