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

Pupils and staff show their true colours to support Harrison

Pupils and staff show their true colours to support Harrison

A Staffordshire primary school has marked the end of term in a very special way, hosting their very own Colour Run to raise funds in support of one of their pupils.   Five-year-old Harrison, who attends Pirehill First School in ...
New cardiovascular framework recognises the vital role of MASLD

New cardiovascular framework recognises the vital role of MASLD

The publication of NHS England's new Cardiovascular Disease Modern Service Framework is an important milestone for people affected by liver disease and a significant step forward in recognising the links between liver, heart, kidney ...
Liver UK launches in Westminster to put liver disease on the political agenda

Liver UK launches in Westminster to put liver disease on the political agenda

Liver UK, the new name for the British Liver Trust and Children’s Liver Disease Foundation, has officially launched in Westminster with a clear message to parliamentarians -- liver disease is rising, largely preventable, and demands ...
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.