Toddler with fatal genetic disease given world’s most expensive drug – but it’s too late to save sister
A 19-month-old girl has been successfully treated for a fatal genetic disease with the world’s most expensive drug.
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The Genomic Data Infrastructure project will share genomic data across 20 EU countries to boost biomedical research and the development of personalised medicine.
Read more: Ireland joins EU genomics project to help find genetic causes of disease
A team of doctors in the U.S. and Canada are reporting a medical first. They were able to start treating a child’s rare and often deadly genetic condition while she was still a fetus in the womb—the same condition that claimed the lives of her siblings. Now 16 months old, the child, named Ayla, appears to be…