The Castleman Disease Collaborative Network is hosting a gala next month to raise money to continue to research the causes of Castleman Disease and find the cure. Castleman is as…
Happy Fall Friday Patient Worthians! This week we have the amazing story about a woman with dystonia. We also have a video review of a man diagnosed with CVID. Additionally,…
I’ve written several articles recently on Cushing’s disease and the difference between it and Cushing’s syndrome—which I felt compelled to do because, I admit, in my own naivety, perhaps like…
When I was young, my grandfather delivered coal. And when I asked, “How much coal did you deliver today, Papa?” He always replied, “A shit ton!” That was Papa’s favorite unit of measurement.…
I want to see my kids grow up. I just want to see them a happy, that’s all. I think that goes with just about any parent; they just wanna…
We all know that receiving a rare disease diagnosis brings along a whole wave of emotions. Relief, anger and fear are just a few. It's very common for people to…
Bitartrato de cisteamina es su nombre, y salvar vidas es su juego. No es frecuente que se escucha una droga conocida como (probablemente debido a las ramificaciones legales) "salvar vidas",…
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