ERDC Community Update A woman in our community once told us that TAVNEOS was the first thing in years that let her feel like herself again — off the high-dose steroids that had reshaped her body and her mood, and back to a version of her disease she could live with. Stories like hers are…
There is a Save Rare Treatments task force that is working on saving the incentives for pharmaceutical companies who create the research and medications for our rare diseases. These incentives were accidentally overlooked in the recently passedInflation Reduction Act.Without getting too much in the weeds – we’re trying to get Congress to pass the Orphan…
Healthcare. There’s something in that word that brings up a visceral and usually unpleasant sensation in the pit of our stomachs. And. It’s obviously essential for the survival of people with rare and chronic diseases. Years ago my wife started an organization to help people with Parkinson’s Disease and their care systems. She was…
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