HIST1H1E Syndrome and our Family


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Welcome family and friends!  Here you will find the Odgers family journey to discover more information about this syndrome. We invite you to share your story about HIST1H1E syndrome.  As of 2020, we currently know of about fifty individuals with this syndrome, including our daughter Bonnie. We will provide the latest updates on research, personal anecdotes and community outreach. Feel free to share any new information about this rare syndrome and encourage you to share this group with other rare genetic disorders.

Thank you for visiting! Scott, Anna-Lisa and Bonnie Odgers