Open Letter addressed to the European Commission

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As a result of and informed by the planned sessions‘ aims of the 12th European Conference on Rare Diseases and Orphan Products (ECRD 2024), an Open Letter addressed to the European Commission has been put together, urging the incoming European leaders to prioritise health in future policies, establish a comprehensive European Action Plan for Rare Diseases, and promptly tackle the critical needs of the rare disease community through actionable measures in upcoming work programmes.

The rare disease community, committed to improving health outcomes and quality of life for the 30 million people living with a rare disease in Europe and their families, gathered at the 12th European Conference on Rare Diseases and Orphan Products (ECRD 2024) to formulate, discuss and propose clear, targeted policy demands that will have far-reaching implications for EU-wide and national rare disease policies.

As the European elections approach and a new mandate for the European Parliament and the European Commission is imminent, the Open Letter argues in favour of putting health at the forefront of future EU leadership, underlined by a significant budget allocation for health under the 2028-2035 Multiannual Financial Framework.

Health must not be sacrificed and the rare disease community should work together to protect and ensure a strong and resilient European Health Union that goes beyond crisis preparedness. Building a future-proof policy for rare diseases in Europe means constructing the engine of an inclusive European Health Union that drives the whole ecosystem forward.

If anyone wishes to sign the Open Letter you may do so here by the 3rd of June.

The European Conference on Rare Diseases and Orphan Products (ECRD) is recognised as the largest patient-led rare disease policy event in the world, where collaborative dialogue, learning and conversations take place, forming the basis for shaping targeted rare disease policy and enabling important and innovative discussions at national and international level.