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The conference on Rare diseases and European reference networks will be organised under the auspices of the Spanish Presidency of the EU Council and in cooperation with the authorities of the Basque Country. It will take place on 11th October 2023 in the Euskalduna Conference Centre in Bilbao, Spain. Interpreting will be provided from/to Spanish- German-English-French-Basque, webstreaming in English and Spanish is foreseen.

On 10th October, the day before the Conference on Rare diseases and the European Reference Networks, the European Economic and Social Committee will organise a side event on a neurodegenerative disease Amyotrophic lateral sclerosis (ALS) in cooperation with the authorities of the Basque Country.

The aim of the event is to raise awareness about ALS and its impact on the life of patients and their families, review the progress made in research to provide better treatment and better care, and inform on actions developed at European level, such as the EU ALS Coalition.

Vinciane Quoidbach, Public Health and Policy Research Project Manager at EBC, will take part in a session on “Action at European level” on 10th October at 17:00 – 18:00. She will highlight the need to pursue the intense research being conducted in many areas related to ALS, from basic science seeking the roots of the disease to therapy development to find effective treatments. She will also share the outcomes of the EU Action Plan on Rare Diseases, published in the framework of the Value of Treatment project, coordinated by EBC. Follow the livestream!

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