El pasado 22 de abril, Barcelona acogió un evento sobre enfermedades minoritarias neurológicas durante la primera edición de Únicas SJD Talks, celebrada en el Museo de la Ciencia CosmoCaixa. Esta jornada, resultado de la colaboración entre el Hospital Sant Joan de Déu Barcelona y la Fundación “la Caixa”, reunió a expertos de renombre internacional, así como representantes gubernamentales y asociaciones de pacientes, con el objetivo de abordar los desafíos y avances en el tratamiento de estas enfermedades
Throughout the morning, leading healthcare professionals and top researchers shared knowledge, perspectives and challenges regarding neurological minority diseases. Participants included Dr. Óscar Marín, director of the Center for Developmental Neurobiology at King's College London Hospital, and Dr. Joan Camprodón, director of the Laboratory of Neuropsychiatry and Neuromodulation at Massachusetts General Hospital.
In addition to the international experts, the event was attended by government representatives, such as Juan Fernando Muñoz, Secretary General for Digital Health, Information and Innovation of the National Health System, and Manel Balcells, Minister of Health of the Generalitat de Catalunya. Patient associations also played a key role, with the Spanish Federation for Rare Diseases (FEDER) being one of the leading voices in the debate. The industry was also able to contribute its point of view, reflecting on the current situation regarding access to orphan drugs and treatments and research in these fields.
AELMHU, in its firm commitment to progress and innovation in the field of orphan drugs, was able to attend this event, which is presented as a space for reflection and collaboration, where crucial issues such as access to innovative treatments, early diagnosis and the need for public awareness of neurological minority diseases will be addressed.
The first SJD Talks concluded with a call to continue advancing research and support for patients and their families, in order to improve the quality of life of those who face these pathologies.