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Language and country discrimination to access clinical trials have been identified as issues that violate children's rights in different regulatory environments. An EnprEMA working group is leading a

Since 2014, the renowned neuroscientist Óscar Marín has been leading the Centre for Neurodevelopmental Disorders at King's College London, where he studies human brain development. He will direct this

In response to inquiries and requests from those interested in this year's project call, Share4Rare will grant funding to the best collaborative research initiative based on data reported by patients

A recent study published in the scientific journal Pediatric Neurology provides new insights into the clinical, genetic, and pathophysiological aspects of TRAF7 syndrome, an ultra rare neurological

People need to name things. Naming is our way of creating some order in this chaotic world. Unfortunately, many people are not able to name their disease. In Europe, it takes an average of five years

A pioneering clinical trial led by Dr Àngels Garcia-Cazorla from the Sant Joan de Déu Research Institute · Sant Joan de Déu Hospital has demonstrated that oral administration of the amino acid L

In science, things take time, but perseverance can eventually bear fruit. The results of this work, published in the European Journal of Human Genetics, began in 2004 with the study of a 12-year-old

Share4Rare aims to enhance research on rare diseases through collaborative knowledge generation. The platform provides researchers with a secure infrastructure to conduct their investigations

A team of experts from the Sant Joan de Déu Research Institute and the IRB Barcelona has studied the cases of four children who have developed two different tumours to try to solve the origin of the

Education stands as a key pillar of Share4Rare. Thus, we are constantly working to provide the rare disease community with tools and resources to better understand the various research dimensions of

Collaborative research into rare diseases stands as one of the cornerstones of Share4Rare. Year after year, we endeavour to foster the development of research projects in this field that focus on the

The new building will rise 250 metres from the Sant Joan de Déu Hospital, situated between the municipalities of Barcelona and Esplugues de Llobregat (Barcelona province, Spain). Its main facade will