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Patient pathways for rare diseases in Europe: ataxia as an example.

Julie VallortigaraJulie GreenfieldBarry HuntDeborah HoffmanCarola ReinhardHolm GraessnerAntonio FedericoVinciane QuoidbachSteve MorrisPaola Giunti
Published in: Orphanet journal of rare diseases (2023)
This study provides crucial information about the ataxia patients care pathways in three European countries. Overall, the results showed a trend in patients' satisfaction being better in SAC compared to non-SAC. The outcomes can be used now for policy recommendations on how to improve treatment and care for people with these very rare and complex neurological diseases across Europe.
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