As Rare Disease Awareness Month gets underway, it’s a good time to reflect on health conditions that are too often overlooked, misunderstood, and forgotten. Rare Disease Day itself occurs on the last day of February, but for families living with them, awareness isn’t limited to a single day. Rather, it’s…
Discussion
The year did not ease in gently for our family. January came in loud and demanding, reminding families like mine that a new year does not promise a clean slate. Instead, it brings more charts, more hospital rooms, and yet another recalibration of what normal looks like. The day after…
Becoming educated and informed about Batten disease is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your journey.
There is no cure for Batten disease yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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