World Orphan Drug Congress 2026: When science meets arts.

I’m coming back from the World Orphan Drug Congress 2026 in Amsterdam. It was last week and it took me a while to connect with my emotions, feelings, and thoughts.

It was the first time I stepped in as a regulatory affairs executive, a member of a health-related practice doctorate (PD) board, a scientist, artist, epistemo-pathologist, and patient advocate who writes about decolonizing Western medical science, an academic and experiential contributor to the colonial trauma healing journey in the African diaspora, and a patient diagnosed with Ehlers-Danlos Syndrome by modern Western science, officially classified as a rare disease.

It was an opportunity to deepen the knowledge that I bear with my five hats. More importantly, I was honored to connect with amazing patients who lead medical innovation because Western medical science and culture marginalize their conditions.

This year, thanks to the generosity of Terrapin, I invited my PD student and collaborator, a designer and patient advocate who dedicated her artistic research to health, care, illness, and disability. Being able to have the perspective of someone far away from what we do is so valuable. A couple of the things they said struck me:

“There are so many mothers trying to fill the gaps that the healthcare system left by searching for treatments for their children. It’s another invisible burden on women,” my artist collaborator noticed.

Indeed, we are so used to taking the work mothers do for their children for granted that we might overlook their leadership role in healthcare. Those women have developed CEO-level skills, many even bearing this official role with all the related responsibilities. I see this pattern too in other marginalized realities: ethnic minorities, people living with disabilities, and people living in poverty, amongst many others. So the question is: how can we make sure that those skills are broadly recognized for the value they bring to healthcare and society at large?

My artist collaborator added, “Most of those women are white, educated, and rather high middle class. They do it because they can. What about those who don’t have access to the same resources?”

Meta-marginalization, marginalization within marginalization, is a Western reality I’ve also witnessed in all the marginalized realities I have intersected in my life. It’s not nature. It’s nurture. And it’s been so culturally nurtured for centuries that it became culture. It spread and calcified into Western society like the cancers we fight in healthcare. As an epistemo-pathologist, I diagnose those kinds of terminal conditions that affect knowledge. It’s a little step, but it can go far. As we say in Africa, “If you want to go far, go alone. If you want to go farther, go together.”

My and other people’s work needs to be amplified in an interconnected way to address this epistemic condition. In this context, collaborating with the decolonized humanities, like radical art, critical anthropology, and many other disciplines that modern Western science’s epistemic cancer has labelled as non-rigorous, is important. Acknowledging each other’s contribution and the humanity that lies at the center of it is the first step of meaningful collaboration. It’s intuitive for many people on this planet because their traditional knowledge is based on interdependence. For them, for me, working in an interconnected manner is a path to decolonial healing. And for the 12% minority on Earth whose tradition is individualistic, it’s the opportunity to continue to grow their humanity and join the rest of the world.

My artist collaborator remarked, “I appreciate what patient advocates do in healthcare. Still, they should [not] be in a position where they must move heaven and earth for themselves or their children to survive and live in dignity. I don’t want to live in a society where this labor is normalized, and I’m afraid it will be. The healthcare system needs to take accountability.”

Indeed, in an ideal world, governments, corporations, and NGOs would take accountability to ensure that the realities the Western system marginalizes get systemic equal access to healthcare. And accountability has to be structural, not sentimental: compensation for the labor currently externalized onto patients and families, attribution and authorship where their knowledge generates evidence, governance seats where priorities are set, and legal standing where their rights are at stake. Without those structures, hope becomes another way of asking the marginalized to do unpaid work—and normalization becomes the system’s quietest form of extraction. This is the guardrail against the fear my collaborator named: that a society learns to accept as permanent the labor it should have made unnecessary.

The truth is, the Western system needs healing too. It’s been living in colonial amnesia for 500 years. It has refused to see how it’s been built to systematically marginalize the realities it doesn’t value, even when those realities were the overwhelming majority of humanity.

As a decolonial practitioner, I have little hope this praised system that marginalizes will change, as it is the unaddressed colonial DNA of Western culture. It’s the cancer that has been celebrated as the Golden Age in the Netherlands, where the World Orphan Drug Congress was organized last week. And we cannot heal when we praise diseases, but we can when we praise patients who fight those diseases.

As a patient whose reality has been meta-marginalized, my hope is in the people. It’s in the dedicated patient and their allies that I met last week. My hope is that we continue to build an interdependent ecosystem beyond the individualist echo-system. My hope is that every one of us understands they are a part of this rainforest of lives and ideas. My hope is that each of us understands their contribution. Then, let God, the Universe, the Ancestors, or whatever we believe in take care of the rest, while we take care of those who need it the most.

I feel privileged to be able to do what I do. And the World Orphan Drug Congress reminded me of it.

Have a thoughtful healing journey.

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