First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most people. Now, the good news: You already know how to face loneliness and adversity — qualities that make you far stronger…
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Recent Posts
- 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
- Study maps juvenile Batten disease timeline, aiding care planning
- Rare disease awareness is about a brighter future for all of us
- Advocacy and communication were key to receiving quality care in a crisis