As part of the IGP rare project, which emanates from a collective bringing together health professionals, researchers and patient associations, an online survey was launched in February 2022 to collect the experience of people with a genetic disease and who had to inform their family members of the risk of transmission. The questionnaire (in french) is available online until March 2022.
This study will allow, after analysis of the results, to understand how the announcement process can negatively impact family ties and to develop solutions to improve genetic information to relatives.
