The RDCRN research has truly impacted our patient advocacy group (PAG) in a multitude of positive ways.

The natural history study being conducted will enable our patients and families to participate in gathering data critical for the success of our future therapies and treatments.

At the BDSRA Annual Conference in July, we had Centers of Excellence as well as BDCRC participants collaborating and making critical connections. This last year was the largest turnout for the BDSRA Conference in over 8 years.

We had over 30 researchers and clinicians presenting on a multitude of topics relating to all the forms of Batten disease.

We had dedicated areas for patients and families to participate in clinical studies.

The shared information and collaboration was extremely energizing and engaging to our BDSRA Foundation members and hence our PAG.