“I Really Witnessed It First Hand”: How Personal Experience Shapes Loubna Ouriaghli’s Work 

A diagnosis is supposed to be the end of the uncertainty. For some families, it is also the moment they realize there is nothing more medicine can offer. Loubna Ouriaghli, Head of Government Affairs & Policy at Ipsen, witnessed that moment with her own mother who was diagnosed with a rare disease.  She saw the symptoms appear one by one, the years it took to finally have an answer and the silence that followed when that answer came with no treatment. 

That feeling of powerlessness became a turning point. Rather than resigning herself to it, Loubna chose to transform it into commitment with her expertise, her position, her skills so that other families, other children like her, would not have to face the same situation. As Loubna is growing a family, this personal perspective is further deepening her commitment to improving outcomes for future generations.

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Since then, she approaches her role with a clarity that goes beyond professional responsibility. Government Affairs and Policy may not seem like an obvious place for that kind of purpose. It is the work of negotiations, frameworks, and political relationships. But it is also precisely where the gap between a treatment existing and a patient actually receiving it gets decided. Rare disease patients don’t just need treatments to exist, they need those treatments to be recognized, reimbursed, and made accessible. For someone with Loubna’s background, that work carries a weight that goes beyond the professional. 

She knows the road is long, and that no single person can change the system alone. But for someone who has seen what is at stake, that is not a reason to step back. It is reason enough to act.