When families first face a diagnosis, there is often a lack of genetic counselling to help them understand the impact of the disease on the person diagnosed, and the implications for one’s relations. Am I a carriers? How do I comply with expectations to share the possible risks with my immediate and extended family? The main objective of IGP Rare is to propose measures to optimise a more informative and less harmful «Information Génétique de la Parentèle,» by understanding the psycho / socio / medical mechanisms involved, based on a large collection of experiences of patients with a rare disease. The primary role of EURORDIS in the project is to conduct an analysis of comparative European approaches.
January 2021 – December 2023