Science can only benefit society when the policies follow – The European Amyotrophic Lateral Sclerosis Coalition Policy Paper

The EU ALS Coalition policy paper has been officially presented at the EU ALS Coalition event “Time to improve the life of people living with ALS | Policy recommendations for improved diagnosis, care, and treatment” on 7th September 2023.

The paper sheds light on the experience of receiving a diagnosis and living with ALS in Europe today. It emphasizes the existing gaps and unmet needs in the areas of diagnosis, care, and prognosis for individuals living with ALS. Additionally, the paper offers practical policy recommendations that can be put into action to address these issues.

During the event, which took place at the European Parliament and was co-hosted by MEP Tomislav Sokol (EPP, Croatia) and Istvan Ujhelyi (S&D, Hungary), a panel of experts presented the findings from the policy paper. They also engaged in discussions regarding the importance of making ALS a political priority in future national and European policies. This emphasis on prioritizing ALS is crucial for significantly enhancing the daily lives of individuals affected by this disease, as well as their families and caregivers.

In the panel discussion, Frédéric Destrebecq, the Executive Director of the European Brain Council, highlighted BRAINTEASER as a relevant example of initiatives aimed at deepening our comprehension of the disease, promoting knowledge sharing, and advancing ALS treatments. He explained, “The BRAINTEASER project offers a pathway to improve disease management and foresee the adjustments needed in management to ultimately enhance patient outcomes”.


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