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On Rare Disease Day 2024, we had the privilege of participating in the launch of Mapping Rare, an innovative interactive project spearheaded by Rare Diseases International, an esteemed organization dedicated to uniting efforts for rare diseases globally. The project shines a light on the significant achievements within the global rare disease community, and we were thrilled to share our insights and experiences as part of this initiative.

Mapping Rare emerges as a multimedia benchmark that captures the essence and progress of the rare disease community, reflecting on both its historical milestones and current endeavors. It serves as a vibrant testament to the community's accomplishments and the future goals we collectively aim to reach. This initiative underscores our shared commitment to improving the lives of people living with rare diseases, offering a glimpse into the journey towards enhanced access to diagnosis, treatment, and care, as well as spotlighting community-driven solutions to the myriad challenges faced.

The introduction of Mapping Rare was celebrated with a special webinar on March 1, 2024, providing a platform for an extensive overview of the project alongside a panel discussion featuring key contributors. Notable keynote addresses were delivered by industry experts, including Dr. Roberto Giugliani, MD, PhD, a prominent figure from the Federal University of Rio Grande do Sul (UFRGS) and Co-Founder of Casa dos Raros, as well as Dr. Rüdiger Krech from the World Health Organization, and Dr. Shinya Iimura from the IFPMA Industry Coordination Group on Rare Diseases. The session was enriched with profound insights and an interactive Q&A with participants.

With its official unveiling on February 29, Mapping Rare made a significant impact by introducing the public to the initial set of 13 projects on its dedicated website. Notably, only two patient organizations were selected from each continent to be featured, underscoring the project's selective and prestigious nature. We are immensely proud to announce that SKDEAS was one of the two organizations chosen from North America, marking us as part of an exclusive group of only 13 projects highlighted worldwide. This selection recognizes our efforts and contributions to the rare disease community, positioning us at the forefront of this global initiative.

For those unable to attend the live webinar or interested in revisiting the insightful discussions, a full recording is accessible below. As proud participants in the Mapping Rare project, we stand in solidarity with the global rare disease community in this collaborative venture, celebrating our collective strides and advocating for the well-being of individuals living with rare diseases.

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