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Amyotrophic Lateral Sclerosis, a rare neurodegenerative disease: European landscape assessment and policy recommendations for improved diagnosis, care, and treatment.

Kate Quigley, Gisela Rovira Tomas, Elena Nicod
September 2023

The European Amyotrophic Lateral Sclerosis (ALS) Coalition has published a paper that sets forth 10 policy recommendations aiming to improve the lives of people living with ALS and their caregivers. The paper sheds light on what it means to receive a diagnosis and live with ALS, and highlights the gaps and unmet needs in Europe today. The recommendations outline specific actions towards achieving the following goals:

  • An optimised diagnosis: time to diagnosis needs to be shortened, misdiagnosis need to be reduced and diagnosis should be expert-led and continuous.
  • Matched care: ALS complexity and progression requires matched care. Health care systems need to proactively match the needs of people living with ALS and address existing gaps in care, social care needs to be strengthened.
  • A better prognosis: approval and access to new drugs need to be prioritised, research and development barriers must be minimised, and further innovation needs to be ignited.

The European ALS Coalition was formed at the beginning of 2023 with the overarching aim of fostering a positive policy environment that will improve the lives of people living with ALS (PLWALS) and their carers in Europe. The coalition brings together a diverse range of experts with a variety of experiences and perspectives on ALS in Europe. This policy paper was launched on the 7th of September 2023 in the European Parliament and serves as a roadmap not only for people living with ALS, but for all persons living with similar and complex neurogenerative conditions.

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