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An online survey of genetic information in relatives

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) … [Read more]

First-ever United Nations resolution to increase visibility for persons living with a rare disease and their families

On 16 December 2021, the UN adopted the first-ever UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families.” A huge recognition for families with rare diseases. The resolution increases visibility for the 300 millions people living with a rare disease and their families. This milestone is the outcome … [Read more]