Maria Elisa Mancuso: Shaping the Future of Hemophilia Care with Patients
Maria Elisa Mancuso, Professor of Medicine at Frankfurt University Hospital, Medical Specialist at Humanitas Research Hospital, shared a post on LinkedIn:
“The future of hemophilia care must be shaped not only for patients, but with patients.
Among the most meaningful moments of the XIX AICE Triennial Congress in Verona were the discussions that reminded us why scientific progress matters and whose lives it is ultimately intended to improve.
Patient advocacy is much more than representing the interests of a community. It means ensuring that lived experience informs research priorities, healthcare decisions, access to treatment, and the definition of meaningful outcomes.
Olivia Romero Lux Romero-Lux brought an important perspective on the role of patient advocacy, while Glenn Pierce Pierce’s reflections on a lifetime with and for hemophilia reminded us how personal experience, scientific commitment, and leadership can come together to drive change.
These contributions reinforced a fundamental message: advances in treatment are essential, but listening, partnership, and shared decision-making are equally important.
Thanks to Cristina Cassone and Enrico Ferri Grazzi from FedEmo and Andrea Buzzi from Fondazione Paracelso for the precious work done for the patients community in Italy.
As clinicians and researchers, we have much to learn from the people whose lives are directly affected by the decisions we make.
The most meaningful progress happens when scientific expertise and lived experience move forward together.
Thank you to everyone who continues to build bridges between the scientific and patient communities.”
Other posts featuring Maria Elisa Mancuso on Hemostasis Today.
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