The FXBO31 Foundation Family Registry is a confidential contact database that enables us to keep you informed of ongoing FXBO31 disease research, including future clinical research opportunities.

The Registry also enables the FXBO31 Foundation to better understand the prevalence of FXBO31, including the different subtypes and geographical locations. This helps us tailor our education and support activities according to the needs of our families.

The Registry is open to all current families. The information collected in this form is kept STRICTLY CONFIDENTIAL. Your involvement in this survey is entirely voluntary, and you may request to be removed from the list at any time.