Participation in Consortia

The RHU-COSY - Cure Overgrowth Syndromes

The RHU COSY " Cure overgrowth Syndromes " is led by the team of Pr Guillaume CANAUD (Inserm/Hôpital Necker Enfants Malades). This project is a winner of the ANR's Call for University Hospital Research Projects in Health. This hospital-university health research action aims to support translational health or clinical research projects, which may be based on fundamental research in biology, epidemiology, social sciences or health economics. The Foundation For Rare Diseases is a partner of the RHU-COSY by participating in actions to improve the care of patients with hypergrowth syndromes with the launch of an AAP SHS dedicated to these diseases. It also coordinates the communication actions of this project.

The Foundation's role: The Foundation is involved at two levels of the project.
It contributes to the communication and dissemination of the results of the RHU-COSY: visual identity, communication media and distribution channels.

It has also included in its 2021 call for research projects in the Humanities and Social Sciences, a line on hypergrowth syndromes (HS), to enable a better understanding of the individual, family and psychosocial consequences of HS and improve the care and daily life of patients and their families.