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IGP Rare

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.

Project duration:

January 2021 – December 2023

EURORDIS priorities on Research

Research leads to a better understanding of rare diseases, quicker and more accurate diagnosis, innovative treatments and cures, and better health care. It represents hope for the 30 million people living with a rare disease in Europe and their families.

Contact person

Roseline Favresse
Research Policy and Initiatives Director