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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…
For children with Batten disease, some behavioral and emotional challenges are a response to difficulties brought on by the inherited disorder, a new study highlights. While the researchers emphasized that all children with Batten react to the disease in their own unique way, they offered some strategies that may…
An inflammatory environment driven by brain cells called microglia may act to prevent the brain from repairing itself in Batten disease, according to a new study done in sheep chimeras. The study, “Aggregation chimeras provide evidence of in vivo intercellular correction in ovine CLN6 neuronal ceroid…
A 13-year-old girl experiencing unexplained seizures and no other apparent symptoms was ultimately diagnosed with juvenile Batten disease, according to a recent report. This “is probably the first case report of [juvenile Batten disease] with only seizures as presentation,” the researchers wrote. Titled “Batten’s Disease: A…
The Batten Disease Support and Research Association (BDSRA) will present a special international edition of its virtual Ask-An-Expert series today. The webinar will explore the latest in treatment development for this group of rare inherited neurological conditions, with an emphasis on gene therapy. The free interactive event, “Let’s Have…
A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult,…
The layers of the retina — the part of the eye that’s damaged in Batten disease — are differently affected and show a distinct progression between naturally occurring sheep models of CLN5 and CLN6 disease, a study shows. Notably, all retinal layers were affected in sheep with CLN6 disease.
The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health systems to facilitate secure and efficient transfer of data across systems in different European nations. The move is expected to…
Parents of children with juvenile Batten disease face many challenges, but may find value in small moments of joy, a new study highlights. Juvenile Batten, also called CLN3 disease, is the most common type of the inherited neurodegenerative disorder. Usually starting between ages 5 to 7 with vision…
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