Remarkable you

Equity for rare diseases means more representation than you can imagine. ✨
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Imagine a world where rare individuals are equally represented in the media, not only shining a light on these conditions to promote education, but also to encourage empathy and gain recognition from those in power to dedicate funding for research towards treatments and cures.
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Living with PIK3CA-related overgrowth syndrome (PROS) subtype Klippel-Trenaunay Syndrome, I grew up in a world where I needed to explain my condition and my symptoms to everyone, my friends, my teachers, even total strangers. I live with people thinking that my vascular birthmark is simply a cosmetic issue and not just the outward sign of a much more complex condition that will affect me my entire life.
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As an advocate for the rare disease and vascular anomaly community, I want to make a difference in the lives of all individuals born with these conditions. Imagine a world where rare is beautiful. 💕
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zebedee
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