• Research Brief Spring 2017

    Research Brief Spring 2017

    Having a Son or Daughter with Jacobsen Syndrome/11q Deletion Syndrome: Perspectives of Parents by Stephanie Meredith, Anthony Lobianco & Harold Kleinert Jacobsen syndrome (JS) is a rare genetic condition that often causes intellectual disabilities and health issues and has recently been added to various cell-free DNA prenatal screening tests. This condition often includes multiple physical features, a…

  • 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 However, sometimes they may receive outdated information or resources that leave them frustrated and confused.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…