patientadvocacy
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What If Communities Living With Rare Conditions held the Key to a More Humane Medicine? Report from the World Orphan Drug Congress 2025, Amsterdam.
The next scientific revolution will be led by patients’ wisdom and human dignity, and it won’t be televised. Last week, at the World Orphan Drug Congress in Amsterdam, I had a profound experience. As I moved between conversations—wearing my different… Continue reading
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Beyond the P-Value: Decolonizing What Counts as Significant in Medicine—A Patient-Empowering Story to Reclaim our Human Reality (Short Book actively searching for a publishing house)
How a simple statistical number became medicine’s cultural gatekeeper—and how we reclaim truth beyond binaries. TRIGGER WARNING The following text contains the overlooked, invaluable lived experiences of countless humans with the hegemony of modern Western science over patients and humanity—its… Continue reading
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🌿 Summer of Unlearning: A Series to Reimagining Healthcare- Week 5 – The end is just the beginning: The Patient-Led Scientific Revolution. (Short e-Book)
It’s our final installment of the Summer Of Unlearning, a series of books to unlearn, open our minds, and reimagine healthcare. This insightful series honors the artist-researchers with whom I collaborate as a science decolonization writer and self-declared epistemo-pathologist. The… Continue reading
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🌿 Summer of Unlearning: A Reading Series for Reimagining Healthcare – Week 4 – Leah Lakshmi Piepzna-Samarasinha’s Care Work: Dreaming Disability Justice – Where access is love, not compliance
What is the Summer of Unlearning?This series was born from conversations with artist-researchers and survivor-patients—those creating radical wisdom from the margins of medicine.Each week, we engage a book that reveals the gaps in Western medical thought—and lifts up new paths… Continue reading
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A Quick Mental Health Guide: Surviving Institutional Gaslighting & Reclaiming Your Reality (Interaction with A Museum – Epilogue)
In April 2025, I critiqued Huis Marseille’s Revoir Paris exhibition for omitting the violent history of human zoos adjacent to photographed sites like the Jardin des Plantes. Their response—a verbose, performative non-reply—mirrored the institutional gaslighting marginalized communities endure daily. I… Continue reading
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Black History Month: How radical Self-Care empowers All Patient Advocates.
What is Radical Self-Care? Radical self-care is more than a trendy buzzword; it is a transformative practice rooted in activism, resilience, and the fight for social justice. While the concept has gained widespread popularity in recent years, its origins lie… Continue reading
Reappearance 