Scientist 1, Revvity
Max is a DeafBlind and Disabled Scientist, and advocates for people like them with rare diseases in STEM. Life with a rare disease in STEM has been difficult, from university employment teams telling Max they’d never make it into a lab, to industYou chose your priorities for the Rare Disease Framework. What would ours be? Young adults living with rare conditions share their priorities for a Rare Disease framework which speaks for them
Disability as a young person in STEM makes my life awesome. Disability should never be a bad word, and having a rare disease is never something to be ashamed of. I’ve faced a lot of barriers in my journey to becoming a scientist, and almost none of them were due to my actual disabilities. Having a rare disease makes me COOL.
Rare Youth Voices and Choices
My three wishes for rare disease are: I wish people like me were treated with dignity first, not pity; I wish people with rare diseases could access healthcare more easily; I wish people with rare diseases were trusted as experts on our lived experiences.