On 20 February 2019, euro the Global Commission was jointly launched in Brussels and New York. The Global Commission aims to shorten the diagnostic odyssey of patients with rare diseases.

Romain was invited at this event to discuss the odyssey that led to the diagnosis of a neonatal form de novo Marfan syndrome in her little boy.

He stressed the vital importance of obtaining a suitable diagnosis as soon as possible in the context of rare diseases. As well as the social consequences of this announcement.

Romain mentioned the importance of the ongoing genomic revolution and the prospects it offers in both diagnostics and research. In this context, he had the opportunity to present the action of the F101G and the Project 101 Genomes dedicated to Marfan syndrome.

More information about this initiative: https://www.globalrarediseasecommission.com/AboutUs