With 350 million patients, rare diseases represent the largest disease community on the planet. In fact, if all rare disease patients lived in the same country, they would represent the world’s third-largest country, behind only China and India. Of course, with so many included conditions (more than 7,000 and counting),…
The Long Sprint - a Column by Laura King Edwards
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- Low quality of life found for children with juvenile Batten and their parents
- Gut bacteria changes likely side effect, not driver, of CLN2 disease
- A moment in the sun shines a light on more than just the hard parts
- The part of rare disease care they don’t prepare you for
- Wearable device may aid Batten disease children with vision loss: Study
- Acknowledging the invisible cost of being a caregiver for Batten disease
- Many juvenile Batten disease patients face mental health issues: Study
- Our Batten disease journey carries on quietly, but with determination
- For our rare disease family, February is about love, advocacy, and unity