patient centered concept

Elevating Patient Voices: Rare Disease Day 2024

Author
VP Jakub Tolar, MD, PhD

The heart of health care lies in understanding the unique journeys of individuals. Rare Disease Day is not just about medical advancements; it's about acknowledging and honoring the lived experiences of patients. Their stories, resilience, and insights shape our understanding of rare diseases in profound ways.

A guiding principle of community-driven research is letting communities lead and listening to what matters to them. As we approach Rare Disease Day, we are not only celebrating the progress made in rare disease research but also recognizing the invaluable contributions of those who navigate the challenges of rare conditions every day.

I invite you to attend the annual Rare Disease Day event, co-led by the College of Pharmacy and Medical School, on March 7. This year’s theme will focus on “
Orphan Products for Rare Diseases: Availability and Accessibility - They're Not The Same Thing”. The event will feature a patient advocacy group breakfast, poster symposium, and more. Tune into what our trainees are sharing and how we can collectively elevate patient voices.

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