The Rare Neurology Charter

In Europe, 30 million people are directly affected by rare diseases.

The majority of rare diseases have neurological manifestations, involving central, peripheral nerve and muscle. Most rare diseases are associated with high unmet needs due to the lack of available and effective diagnosis and treatment measures. There is a relative lack of research to develop such measures, at least partly due to the low number of medical experts available for each condition and limited financial resources.

From a lack of available specialists to be able to give a timely and accurate diagnosis, to fragmented care pathways, there are too many gaps in healthcare systems for people living with a rare neurological disease to fall through.

For these reasons EFNA has led a multi-stakeholder group in developing the Rare Neurology Charter. The Charter outlines high-impact policy solutions with the potential to transform the lives of patients.  Building multi-stakeholder support for the identified policy solutions creates a strong platform to address and engage European and national policymakers on an action plan to transform the lives of patients.

Please sign our Call to Action for Rare Neurology to show your support for the Charter and its recommendations. The Call to Action will be used to encourage engagement from policymakers ahead of Rare Disease Day 2025, through the MEP Interest Group on Brain Health and Neurological Conditions.

Click here to access the Rare Neurology Charter or read the Charter recommendations below.

Charter recommendations: