ARRE Foundation shares family survey results

The ARRE Foundation conducted a survey of families from February 25 to March 8, 2021. Feedback from the survey will help inform the ARRE Foundation’s 2021-2023 strategic plan, which is under development and will be published in April 2021.

Over 80 families from 7 countries responded to the survey. Responses included 32 Bohring-Opitz Syndrome families (39.5%), 10 Shashi-Pena Syndrome families (12.3%) and 39 Bainbridge-Ropers Syndrome families (48.1%).

Feedback from the survey indicated a strong need for resources related to care management and that families prioritize the need to build the network of doctors and researchers who treat and study these syndromes. Email, Facebook and the ARRE Foundation website are the most highly preferred methods of communication.

A full summary of the survey feedback is available for download.