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Charities urge action on rare diseases from European Parliament

Elections to the European Parliament are scheduled for next week (June 6 – 9). Although the UK is no longer a member state, our charity continues to collaborate closely with counterparts in EU member states on issues affecting young people with liver disease. We are committed to combating all forms of childhood liver diseases, and it is crucial to unite with others across Europe to address these rare conditions.

Our Chief Executive, Pamela Healy, is a signatory of an open letter to the European Commission, urging the next European leaders to:

  • Prioritise health in future policies and programs
  • Develop a comprehensive European Action Plan for rare diseases that bridges diverse policy areas and aligns existing efforts with clear, measurable objectives
  • Immediately address the urgent needs of the rare disease population by implementing actions identified by EURODIS (Rare Disease Europe)

Click here to read the open letter.

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