Documenting Rare Genetic Conditions

An Ordinary day Karen Haberberg

Karen Haberberg

Karen Haberberg has spent twelve years as a professional photographer documenting stories of human resilience: the memories of a Holocaust survivor, the daily life of a developmentally disabled young adult working on a farm, and more recently, kids with rare genetic conditions. Karen’s parents lost their first child, Rafi, at age three; he died of Tay–Sachs disease before Karen was born. The memory of the child who died so young is never far from the family’s collective consciousness, and inspired the work on this project.

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