Charities urge action on rare diseases from European Parliament

May 31, 2024

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 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. While most liver diseases affecting adults are preventable, around 10% are also classified as rare diseases.

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.

More news

Our Budget Case to the Treasury: Investing in Prevention

Our Budget Case to the Treasury: Investing in Prevention

The Autumn Budget on 28th October is a chance to prevent thousands of families from experiencing the devastating impact of liver disease. Because 90% of liver disease is preventable, government action on alcohol harm and obesity could ...
Liver UK helps shape new European recommendations on liver cancer surveillance

Liver UK helps shape new European recommendations on liver cancer surveillance

A major new paper published in The Lancet Regional Health – Europe has highlighted the challenges of detecting liver cancer earlier across Europe and sets out practical lessons from countries around the world to improve surveillance ...
The LIVERAGE research studies

The LIVERAGE research studies

The LIVERAGE and LIVERAGE Cirrhosis studies are large clinical research studies for adults living with MASLD, a type of fatty liver disease. These studies focus on people with MASH, a more advanced form of MASLD.  The studies include ...
No results found.
Privacy Overview

This website uses cookies so that we can provide you with the best user experience possible. Cookie information is stored in your browser and performs functions such as recognising you when you return to our website and helping our team to understand which sections of the website you find most interesting and useful.