A team of researchers at University of California, Los Angeles are conducting research to better understand the experiences of patients and their families with Angelman syndrome when interacting with the medical system. The goal of this research is to develop […]
Read moreKaren Erickson, PhD, at UNC Chapel Hill, is studying the Prevalence of Cortical Visual Impairment (CVI) in Angelman syndrome and it’s effect on communication. The purpose of this research study is to estimate the prevalence of cortical visual impairment among […]
Read moreThis NIH-funded research study aims to understand how to best support caregivers of children with rare neurogenetic conditions via telehealth. Eligible participants may receive free resources, evidence-based treatments by trained therapists, and/or peer-to-peer coaching by other rare disorder caregivers. Participation […]
Read moreA study at Purdue University will look at gut function in Angelman syndrome and its relationship to behaviors and diet. Gastrointestinal or stomach issues are common in Angelman syndrome however, the reasons are not known. Researchers will compare gut function […]
Read moreThe goal of this study is to better understand the abnormal movements that are particularly troubling to people with Angelman syndrome, what treatment has worked and what has not worked. For those whose movements remain troublesome, caregivers will be asked […]
Read moreIf you are the father of a child with Angelman syndrome, you are invited to participate in a research study. The goal of this study is to better understand how fathers of a child with a genetic condition perceive support […]
Read moreA team of researchers at UNC are investigating the prevelance of cortical visual impairment (CVI) in people with Angelman syndrome. The goal of the study is to estimate how many people with AS have CVI, assess the severity and determine whether […]
Read moreDr. Lawrence T. Reiter at the University of Tennessee Health Science Center in Memphis, TN is conducting a research study to determine if neurons can be grown from the dental pulp of individuals with various neurogenetic syndromes including chromosomal duplications […]
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