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……The funded groups include the Hermansky-Pudlak Syndrome Network, focused on a hereditary disorder that causes albinism, visual impairment, and prolonged bleeding; Project 8p, targeting a chromosomal disorder that impairs physical and mental abilities; and the NEC Society, which works to prevent an intestinal disorder in infants known as necrotizing enterocolitis.
“We realize that’s only 30 groups out of 7,000 diseases,” said Tania Simoncelli, CZI’s head of science policy who is leading Rare as One, as the funding program is called. “But if we can actually work with these groups to figure out the model, figure out what’s generalizable — then anyone can do this.”….