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The Patient-Centered Outcomes Research Institute (PCORI) has selected the ARRE Foundation for a $99,982 Eugene Washington PCORI Engagement Stakeholder Convening Award for a project titled, “Defining and Prioritizing Research Questions and Outcome Measures for ASXL-Related Disorders.” The project will engage caregivers, clinicians, and researchers in further defining the lived experience of families in the domains of neurodevelopment (cognition and communication), behavioral dysregulation, and gastrointestinal-related concerns.
If signed the $1.7 trillion spending package is signed into law, ASXL-related disorders and Angelman syndrome will be recognized by Congress and President Biden.
The 2022 ASXL Research Symposium and Conference isn't just a chance to get together: it's a slingshot forward for the ASXL syndrome community as we seek to learn more about the ASXL genes and how to provide the best care for our children.
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