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Mapping Rare
1 March @ 8:00 PM - 9:15 PM UTC-5
This Rare Disease Day, we are thrilled to invite you to the launch of Mapping Rare, an exciting and interactive project designed to spotlight the remarkable achievements of our global rare disease community.
Join us for a webinar on 1 March to introduce the project, featuring a panel discussion with participants and a keynote address from Dr. Roberto Giugliani, MD, PhD, Professor of the Department of Genetics of the Federal University of Rio Grande do Sul (UFRGS) and Co-Founder of Casa dos Raros, Porto Alegre, Brazil.
Event Details:
Date: Friday, 1 March
Time: 14:00 – 15:15 CET
Registration Link
What is Mapping Rare?
- a multimedia project which will serve as a benchmark for RDI and rare disease community actions, past and present, and illustrate how our members drive change at the global, regional and national levels
- a visual representation of the accomplishments of the rare disease community and the future milestones that we hope to achieve as a united movement joining efforts towards the common goal of improving the lives of PLWRD
- a tool to educate the public about rare diseases and the challenges PLWRD face in accessing diagnosis, treatment and care, along with potential community-driven solutions