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Gillette Children’s has joined the Rare Disease Diversity Coalition (RDDC) -- the only Minnesota organization in the group and the second health care provider to join nationwide. With the help of rare disease experts, and health and diversity advocates, the RDDC’s mission is to identify and work toward evidence-based solutions to lessen the disproportionate burden of rare diseases on communities of color.
Gillette Children’s is known worldwide for its expertise in caring for children diagnosed with rare diseases such as Rett syndrome, spinal muscular atrophy (SMA), acute flaccid myelitis (AFM), Legg-Calve Perthes disease, and Prader-Willi syndrome. In 2021, Gillette Children’s treated over 10,000 patients living with a rare disease.
An estimated 30 million Americans have a rare disease and nearly two-thirds of those people are children. There are as many as 7,000 rare diseases, and in the United States, they are defined as a condition that affects fewer than 200,000 people. On average, it can take five years to get an accurate diagnosis of a rare disease and several conditions do not have a cure or an agreed intervention plan. The problem is compounded for patients of color living with rare diseases who are underrepresented in genome-wide association studies and clinical research trials, in addition to facing bias when seeking diagnosis and care.
“Gillette Children's is honored to join the Rare Disease Diversity Coalition in advocating for improved health equity among patients living with a rare disease,” said Barbara Joers, President and CEO of Gillette Children’s. “We look forward to working with the Coalition to advocate for equitable access, care, research and treatment.”