This past Saturday, more than 150 Gillette patients and their families gathered at Mall of America to recognize, and celebrate, Rare Disease Day. Co-hosted by Gillette Children’s Specialty Healthcare and the University of Minnesota Center for Orphan Drug Research, Rare Disease Day raised awareness of children living with rare medical conditions and the importance of continued research for improved treatment outcomes. As part of Rare Disease Day, families heard from representatives with Gillette and the U of M, and had a blast meeting SpongeBob SquarePants, Dora the Explorer, and other friends from Nickelodeon Universe.
Although this is Minnesota’s first Rare Disease Day, it is celebrated throughout the U.S. and around the world as a way to call attention to the importance of funding for orphan drugs – drugs used to treat unusual medical conditions, but which often don’t make it out of laboratories. This is often because prioritization is put on drugs that would help conditions affecting millions, rather than the fewer individuals with rare disorders.
Here in Minnesota, Gillette—a hospital that specializes in treating kids with disabilities and complex medical conditions—has partnered with the U of M’s Center for Orphan Drug Research since the 1990s to research and develop new treatment advancements for rare medical conditions. Such treatments have already helped thousands of families in Minnesota and beyond, and have potential to help thousands more.