Rare Neurology – a Call to Action!

Rare Neurology – a Call to Action!

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.

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

Charter recommendations:

  1. More funding to support rare neurological disease research
  2. Promotion of the importance of natural history studies for those living with rare neurological conditions
  3. A multidisciplinary approach to rare neurological diseases
  4. A holistic appreciation of the impact on those living with a rare neurological disease, their caregivers, and their families
  5. The patient perspective and lived experience should be incorporated into decision-making, system design, treatment, and care delivery
  6. An empowered patient community – one voice for rare neurological disease
  7. Greater public awareness for rare neurology, and neurology more generally
  8. Health systems need to adopt new approaches to support HCPs in better managing rare neurological disease activity
  9. Recognise the value of precision medicine and precision care
  10. Orphan drug legislation to be optimised for rare neurological diseases
  11. Improving disability assessments
  12. Leverage the European Health Data Space
  13. Realise the potential of the revision of the EU pharmaceutical strategy

Call to Action:
Your support matters!

Sign below to show your support for the development of rare neurology action plans at EU-level which will aid the expanding policy change across the rare neurological disease area:

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Signatories:

INDIVIDUALS

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