The upside of globalization: more and more people with rare diseases find each other to share experiences, knowledge and advances – this is a one inspiring example
Wieacker-Wolff: Melora's Friends
I’m sitting here with my coffee, trying to wake up after a night of not sleeping well. Five tabs of medical publications and one tab for “dictionary.com”. This morning, I’m working on several different writing projects, the most difficult being the simplified-language medical research paper I’ve been pondering for several weeks, the easiest being Melora’s intro letter to the preschool teachers and therapists for this school year. And there’s this blog post, obviously!
We never wanted to be medical researchers. As children, “advocate” was never on our lists of future careers (not that it’s actually a paid career!) Yet, poring over medical journals and understanding terminology we’d never seen before is becoming the new normal. Learning the science of genetics, neurodevelopment, and futuristic medical treatments is what we do now. Our cause is “cutting-edge” and “groundbreaking”, terms we used to be impressed by, but are now disappointed by. It would…
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