European Conference on Rare Diseases Calls for Action in Open Letter to European Commission

The European Conference on Rare Diseases and Orphan Products (ECRD) is the largest, patient-led, rare disease policy-shaping event held in Europe. 

The latest edition of the conference, organised by EURORDIS-Rare Disease Europe under the auspices of the Belgian EU Council Presidency, took place in Brussels and online on 15-16 May 2024. 

As a result of and informed by the planned session’s aims of the 12th ECRD, an Open Letter addressed to the European Commission has been put together, calling 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.

Read the full letter here

Join the voices of the rare disease community by adding your signature to the petition HERE

Please sign the petition by 3 June and share on social media using the messages in our handy toolkit. Don’t hesitate to contact us if you have any questions.