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Today, more than 6,000 rare diseases are affecting up to 36 million people in the EU. For those living with rare diseases - many of them children - quality …
The European Health Data Space has the potential to be the foundation for a truly integrated health care system in Europe
The Treatabolome project is a research initiative to develop a freely available, interoperable online platform to disseminate rare disease and gene-specific treatment information to healthcare professionals regardless of their level of specialized expertise to reduce treatment delays. This initiative is highly relevant to neuromuscular disorders as they are rare diseases by definition. In this special issue of the Journal of Neuromuscular Diseases, experts contribute Treatabolome-feeding systematic literature reviews on rare neurological and neuromuscular disorders.
The Treatabolome project is a research initiative to develop a freely available, interoperable online platform dedicated to disseminating rare disease and gene-specific treatment information to healthcare professionals regardless of their level of specialized expertise.
Date Time Share No deal Brexit could have detrimental impact for four million people in UK living with a rare disease Experts have warned that a ‘no deal’ Brexit will result in the exclusion of the UK from the 24 European Reference Networks (ERNs) that were established to improve the care of patients bearing the lifelong burden of a rare disease, which require highly specialised diagnosis and treatment. Rare diseases are rare, and experts are rarer still. European Reference Networks were set up because no single country has the expertise or resources to cover all of the known rare diseas...