Every week I sit down to write this and feel the same thing: gratitude. Not the performative kind, the kind that comes from watching people do hard, unglamorous, important work and choose to keep doing it anyway. This week’s three advocates are each pulling on a different thread of what it means to make healthcare more human. One is connecting dots at a major European conference. One is making the case that rare disease patients deserve the same storytelling power as anyone else. And one is arguing that lived clinical experience isn’t just nice to have in policy rooms, it’s essential. Let’s get into it.
Katell Maguet | LinkedIn
Katell is a researcher, patient advocate, EUPATI fellow, and speaker, and she has a gift for finding the through-line in a conversation that everyone else is having in parallel. At EUPATI’s Annual General Meeting, she did exactly that. Two threads were running through the conference: patients as partners from the very beginning of research, and moving research beyond tokenism. Katell connected them. Her argument was clear and worth sitting with: real co-ownership doesn’t start when patients are invited to review a protocol or comment on a consent form. It starts with the first kind of involvement, the earliest, most foundational moments of a project. That’s not a small distinction. It’s the whole ballgame. When patients are brought in late, the structure is already built around assumptions that may not reflect their reality. Katell is one of those advocates who makes the field smarter just by asking the right question at the right moment. Follow her work, she’s consistently worth your attention.
Jessica Baladad | LinkedIn
Jessica works at the intersection of storytelling and rare disease, and she has a way of turning a single human moment into a full-blown policy argument, without losing any of the humanity along the way. The moment that sparked this particular post? She met a woman who had been told to eat cat litter to manage her hypoparathyroidism. Read that sentence again. That’s the reality some rare disease patients are navigating, not because their doctors don’t care, but because the knowledge infrastructure, the community, the decades of hard-won advocacy simply isn’t there yet for every condition. Jessica’s point is this: patients with more “privileged” diagnoses — her word, and it’s the right one — have had generations of advocates building the tools, the language, the story frameworks that help patients understand and own their experience. Rare disease patients deserve the same. Not charity. Not awareness months. Command. Jessica is doing the work of building that. Pay attention to her.
Sean Powell, MSW, LCSW, CCM, OSW-C | LinkedIn
Sean is a senior social work and case management executive, and he made a point this week that I think more people in advocacy need to hear. Sharing from Moffitt Cancer Center’s government relations team, he made the case for social workers at the policy table — not as translators or support staff, but as full participants whose clinical experience gives advocacy something real to stand on. Here’s the thing: when a social worker walks into a lawmaker’s office, they’re not carrying talking points. They’re carrying hundreds of patient conversations, family crises navigated in hospital hallways, systems failures witnessed up close. That’s not anecdote. That’s evidence. Sean understands that the line between clinical work and policy work isn’t as firm as the org chart suggests, and that the people who’ve sat with patients through the hardest moments have an obligation to bring that into rooms where decisions get made. That’s advocacy. That’s the work.
If you found value in this week’s edition, the best thing you can do is share it with one person who needs to see it. And if you know someone doing quietly extraordinary advocacy work — in any disease space, at any level — nominate them for a future edition at advocacyatwork.com. This community grows one real story at a time.
See you next week.