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On 7 December 2022 at 16:00-17:30, the European Alliance for Patient Access (EAfPA), with support of the European Brain Council (EBC) and European Federation of Neurological Associations (EFNA), hosted an event in the European Parliament on Rare Neurological Diseases in the EU, exploring the importance of early diagnosis and real-world evidence (RWE) to drive better patient outcomes.

Hosted by MEP Tilly Metz (Greens/EFA, Luxembourg), European stakeholders convened to discuss the critical need for improved access to care, services, and treatment for patients living with rare neurological diseases. Conversations were centred on revisions of current legislation to meet the needs of patients living with a rare neurological condition, as well as the importance of RWE and early diagnosis.

Frédéric Destrebecq, EBC Executive Director, presented the Value of Treatment for rare neurological and neurometabolic diseases case study results and 2022 call to action.

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