No one understands PSP patients better than Kristophe Diaz. These are the 10 things we took away from his talk

Listening to Kristophe Diaz talk about progressive supranuclear palsy does not leave you indifferent. As CEO of CurePSP, he has been working alongside patients, families, doctors, and researchers for years to understand a disease that remains largely unknown. Progressive supranuclear palsy (PSP) is a rare neurodegenerative disease that causes progressive deterioration of movement, balance, speech, and vision. His visit to Ferrer was an opportunity to face that reality. These are some of the ideas that made us stop and think the most:

1. PSP isn't just a disease: it's getting stuck in your own body. You may stop talking or moving, but in many cases you are still aware of everything that is happening around you.
2. It's a life-changing disease... of everyone. It does not only impact those who suffer from it. It transforms the relationships, roles, and daily lives of families and caregivers.
3.  It is diagnosed late. Too late. The time between the first symptoms and diagnosis can reach several years, in a process marked by uncertainty and diagnostic errors.
4.  It is often confused with Parkinson's. The lack of knowledge causes PSP to be initially diagnosed like other more well-known neurological diseases.
5. It's rare, but just as urgent. It affects few people compared to other pathologies, but the needs are just as urgent and real.
6. Patients have no time to waste. The progression of the disease is rapid. Quality of life time is limited, and every advancement counts.
7. The best way to understand it is to listen. Interviewing patients and families is not an add-on: it is the basis for understanding what it really means to live with PSP.
8.  Small details make all the difference. From the number of visits in a clinical trial to the size of a pill, every decision can make or break the patient's life.
9. No organization can do it alone. The solution will not come from a single actor. It is necessary to connect patients, science, industry and regulators in a global effort.
10. Beyond "patient centricity": it is about listening to the entire ecosystem. It is not enough to put the patient at the center. Real change comes when all voices—patients, caregivers, doctors, and industry—are part of the solution.  

Hearing these stories firsthand reminds us why we do what we do. Because behind every piece of information, every trial, every decision, there are people. And understanding their reality isn't just important. It is essential.