The 19th edition of World Rare Disease Day in Catalonia, under the slogan “More than you can imagine”, was held on 26 February, focusing on patients and their families, beyond diagnosis and treatment. The event was organized by the organizing committee, which included Fundació La Nineta dels Ulls, aiming to create a space where genuine patient participation in healthcare decisions could impact daily life and health policy.
🔹 Key topics discussed during the event:
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Updates from the Ministry on rare diseases and patient participation.
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The Royal Decree regulating patient participation: implications and practical application.
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Impact on health technology assessment and real-life decision-making.
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Updates on the #NationalStrategy for #RareDiseases.
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First-hand patient testimonies: from data to personal experience.
The event was hosted by Elisabet Carnicé, offering reflections and debate on health equity and research, as well as experiences that helped promote fairer and more inclusive decisions.
✅ Objectives achieved during the event:
— Realities were made visible, reducing stigma around rare diseases.
— Patients’ experience and knowledge were shared to guide better healthcare decisions.
The event was a space of generosity, perseverance, and achievement, where the stories of patients and their families gave meaning to World Rare Disease Day.
