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Families organize amid government funding cuts into rare disease research
Dramatic cuts to science research grants have particularly affected rare disease research. But some of the people most affected, including those with Nicolaides-Baraitser syndrome, are now organizing their own global research collaborations.
Dr. Paola Nicolaides visiting the home in Palaichori, Cyrpus, where her family fled in 1974 to escape the Turkish invasion of their city of Nicosia.
Deepa Fernandes/The World
Some 25 million Americans live with rare genetic diseases — that’s nearly 1 in 13. More than half are children. The path to discovering what the condition is and finding treatments can take years. But for children who are medical mysteries, getting a diagnosis can be life-changing.
Dr.…
