U.S. Social Security Administration adds Bainbridge-Ropers Syndrome to Compassionate Allowances program
The United States Social Security Administration (SSA) has announced that Bainbridge-Ropers Syndrome (ASXL3) has been added to the Compassionate Allowances program. The Compassionate Allowances program quickly identifies claims where the applicant’s condition is so severe that it clearly meets the SSA’s standard for disability. This can drastically reduce the burden of proof and the amount of time it takes for the SSA to evaluate and make a decision about an individual’s disability claim. Once an individual has disability status, they may be eligible for disability benefits including Supplemental Security Income (SSI).
Families applying for disability for their loved one with Bainbridge-Ropers Syndrome are advised to clearly state in their application that Bainbridge-Ropers Syndrome is on the Compassionate Allowances list (CAL).
Bainbridge-Ropers Syndrome was one of nine conditions added to the Compassionate Allowances program, joining 278 existing conditions on the list. The ARRE Foundation is submitting documentation supporting the inclusion of Bohring-Opitz Syndrome (ASXL1) and Shashi-Pena Syndrome (ASXL2) to the Compassionate Allowances program in future updates.
About the ARRE Foundation and ASXL-related disorders: The ARRE Foundation was established in 2018 as a parent-led patient advocacy organization dedicated improving the quality of life for families living with ASXL-related disorders through research and education. ASXL-related disorders are rare, multi-system neurodevelopmental disorders caused by pathogenic variants in the ASXL1 (Bohring-Opitz Syndrome), ASXL2 (Shashi-Pena Syndrome), and ASXL3 (Bainbridge-Ropers Syndrome) genes with a high burden on patient and caregiver quality of life. An estimated 500 individuals are diagnosed globally with many more living undiagnosed. Common features of these disorders on a wide spectrum of severity include developmental delay, intellectual disability, feeding difficulties, severe constipation, orthopedic complications, seizures, sleep disturbances, and challenging behaviors. While research interest in ASXL-related disorders is growing rapidly, there remains little understanding of the natural history or mechanisms of disease and there are no known treatments or standards of care.
