Batten Disease Centers of Excellence

The BDSRA Foundation is proud to announce the launch of the Batten Disease Centers of Excellence (CoE). It is well known that a variety of specialist services are required to treat patients with Batten disease. This program aims to direct families with children diagnosed with Batten disease to the best care and services available by supporting the formation of care centers with specialized knowledge of Batten disease.

The leaders of successful applications are expected to attend an in-person kick-off meeting for this program hosted by Sanford Health in Sioux Falls, SD. BDSRA will support travel, accommodations, and expenses. At the kick-off meeting, guidelines for collaborative efforts for CoEs will be established along with governance, the formation of a steering committee, and expectations of BDSRA, including financial support.

A kick-off meeting will be held November 9-10 at Sanford Health in Sioux Falls, SD.

For more information, please contact Head of Research & Medical Affairs, Dr. Ineka Whiteman at research@bdsraaustralia.org