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Newly Diagnosed welcome call - December

Friday, December 6 from 12-1pm U.S. Eastern Time (find this time in your time zone): Join this informal, virtual conversation for parents and caregivers with a loved one who has been recently diagnosed with an ASXL-related disorder (ASXL1/Bohring-Opitz Syndrome, ASXL2/Shashi-Pena Syndrome, or ASXL3/Bainbridge-Ropers Syndrome). This call will include a brief introduction to the ARRE Foundation, an overview of resources helpful to newly diagnosed families, and informal discussion with parent volunteers.

Welcome calls are held via Zoom. Please register to receive the Zoom link.

Welcome calls are held every two months in English unless otherwise noted. For immediate support or support in other languages, please email Sarah Scott at sarah@arrefoundation.org. These calls are not recorded.

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November 9

Family Forum: Supporting the siblings of kids with complex needs

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January 13

Understanding unclear genetic test results: variants of uncertain significance (VUS) and likely pathogenic variants in ASXL-related disorders