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Day of rare diseases

Many rare diseases -each of them affect less than one out of 2,000 people- exist at clinical and genetic levels, which makes their recognition and diagnosis more complex. These diseases are generally severe. They are at the root of disabilities and develop in children and young adults. Their rarity enhances the challenge that researchers have to face, in particular for the collection of biological samples from patients or the development of clinical research projects. All these factors imply and require a multidisciplinary approach that associates teams in clinical research, genetics, pathophysiology, therapeutics and Humanities and social sciences.

The Day or Rare Diseases is organized in close partnership with patients’ associations. “The first ones who are waiting for progress in research are patients or disabled persons", points out Professor André Syrota, President of Inserm, "Inserm laboratories are open to these persons so that they can address all their questions about the research conducted in relation with their diseases.”. "We’re heading together towards a hope of recovery!” explains Alain Donnart, President of “Alliance Maladies Rares”.

Submitted on February 5, 2024

Updated on February 5, 2024