New CHEO web portal meant to help provide answers to children with rare diseases

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OTTAWA — Every child is special, but children like five-year-old Noah Williams are rarities. Noah, who is developmentally delayed, was born with a genetic disease so rare that it doesn’t have a name. And — so far — doctors believe he is the only one. But, somewhere in the world, there could be others with genetic sequences that match Noah’s and those kinds of matches could lead to better understanding and even treatment for children like Noah and thousands of others with rare genetic diseases.

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