Voices Across America

Rare Disease patient advocating for disability rights


State: New York
Congressional District: NY13


Blood Disease, Rare Disease

Issues and Challenges

yannick-robin has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Rare / Underserved Disease, Abuse (Mental, Physical, Elder), Caregiving, Disability, Discrimination (nonmedical), Financial Assistance, Gaslighting, Invisible Illness

My Story


I'm yannick-robin, an artist and death care worker with a rare disease. I recently went viral on TikTok advocating for disability rights within theatre through the hashtag #saverickypotts - https://www.tiktok.com/tag/saverickypotts?is_from_webapp=1&sender_device=pc , which now has 4 million views.

My recent project is a Spanish + English recounting of my history with medical neglect leading up to my accidental diagnosis the day I was trying to get top surgery as a part of my medical transition. It would mean a lot to know that the people at 3 Billion know about my disease and story, so I am adding the link to the documentary, here (https://www.youtube.com/watch?v=Hl5ccLNwfbU).

You can read more about how I was diagnosed after my cancelled surgery through my piece 'the surgery is never going to happen', here (https://www.yannickmirko.com/post/the-surgery-is-never-going-to-happen).

Happy Rare Disease Day! Stay safe, be well.

My Motivation and Inspiration

The sense of community I experience when people share their experiences with me after hearing of my own.

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