Contact CamRARE

Contact CamRARE

Max Fisher

Scientist 1, Revvity

Max Fisher

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.

https://www.sense.org.uk/blog/my-life-as-a-deafblind-drag-king/

https://www.youtube.com/watchv=RfmTt4qPLzk&embeds_referring_euri=https%3A%2F%2Fwww.bing.com%2F&embeds_referring_origin=https%3A%2F%2Fwww.bing.com&source_ve_path=MzY4NDIsMjg2NjY&feature=emb_logo

https://www.ntu.ac.uk/study-and-courses/courses/our-students-stories/science-technology/max-fisher

https://www.linkedin.com/posts/max-fisher-ba6142112_delighted-to-have-spent-the-afternoon-at-activity-6999068444172193794-VCsW?utm_source=share&utm_medium=member_desktop

Rare Youth Voices and Choices

You 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 that speaks for them.

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.

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