News / Partnerships / Press Releases - May 17, 2024

EUCOPE signs EURORDIS Open Letter #ActRare2024 at ECRD 2024

On 16 May 2024, EUCOPE signed EURORDIS Open Letter #ActRare2024, during the Closing Plenary session of the 12th European Conference on Rare Diseases and Orphan Products (ECRD), organised in Brussels on 15-16 May 2024.

The Open Letter is a result of, and informed by, the sessions during the 12th ECRD. The Conference brought together people living with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member States representatives. By addressing the Open Letter to the European Commission and next European leaders, EURORDIS and the broad rare disease community aim to shape goal-driven rare disease policies of the future.

“As Europe’s trade body representing small and mid-sized innovative companies working in the field of biopharmaceuticals and medical technologies, EUCOPE is proud to sign EURORDIS Open Letter. As part of the rare disease community, we are committed to shaping future EU and national policies, oriented towards improving lives of people with rare diseases”, commented our Deputy Secretary General, Oliver Sude, who joined the signature ceremony.

Open Letter

We, the Rare Disease community, committed to enhancing health outcomes and quality of life for the 30 million people living with a rare disease in Europe and their families, convened at the 12th European Conference on Rare Diseases and Orphan Products (ECRD 2024) to shape, discuss and propose clear, goal-driven policy asks with far-reaching impacts on both EU-wide and national policies for rare diseases.

We call on the next European leaders to:

  • Maintain health at the forefront of future policies and programmes.
  • Develop a comprehensive European Action Plan for Rare Diseases that bridges diverse policy areas and streamlines existing efforts with clear, measurable objectives.
  • Immediately address the most pressing needs of the rare disease population by integrating the actions ‘within reach’ that we have collectively identified within the work programmes of the next years.

You can read the full Open Letter, and sign it, here.