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The number of activated microglia — the brain’s resident immune cells — are significantly increased by the time seizures start to occur in a mouse model of infantile Batten disease, also known as CLN1 disease, a study shows. Suppressing P2X7R, a receptor protein mainly found at the surface of…
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The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…
From participating in a virtual 5k to sharing personal stories, supporters are set to mark International Batten Disease Awareness Day, observed annually on June 9. The goal of the global event is to raise awareness among the general public as well as legislators, industry representatives, public authorities, researchers, and healthcare…
A social media post about the death of a child from a rare disease reminded columnist Laura King Edwards about her own grieving father.
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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