HDI Shares Importance of Giving Updated Information With Genetic Diagnoses

When parents first hear the news that their child has a genetic condition, they want support and accurate and up-to-date information right away. They fundamentally want to know what life is like for people living with those conditions. However, sometimes they may receive outdated information or resources that leave them frustrated and confused. Parents may also receive a list of medical conditions associated with a condition without information about life outcomes and social supports. Continue reading