Family Register

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

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

The Register is open to all current and bereaved 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.

If you have any questions, please contact Dr. Ineka Whiteman, Head of Research & Medical Affairs, via email at research@bdsraaustralia.org.