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Rare Neurodegenerative Diseases

IX National Conference of Researchers in Rare Diseases

Last Monday, February 10, we celebrated the National Conference of Researchers in Rare Diseases, its ninth edition. With an audience of more than two hundred people, patient associations and researchers have presented their work. This year we had the participation of the association of patients with retinitis pigmentosa of the Valencian Community, represented by its president Almudena Amaya and its social worker Melani Navarro, in addition to the researchers Purificación Marín, Ana Victoria Marco, Lucía Páramo, Mª Carmen Martín, Mirja Hommel, and Cecilia Jiménez-Mallebrera. The talks focused on the social perspective of rare diseases and their diagnosis, and on therapeutic approaches to epileptic encephalopathies, neuromuscular diseases and Wilson's disease. A great day! Many thanks to the speakers for their collaboration and to the great audience for coming once again to the Príncipe Felipe Research Center. We will continue working to raise awareness about rare diseases.

 

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