NBC News chief foreign correspondent Richard Engel announced Thursday that his 6-year-old son, Henry, had died after being diagnosed as an infant with a rare genetic neurological disorder called Rett ...

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Patient advocate Paige Nues elaborates on the patient journey associated with a Rett syndrome diagnosis. Paige Nues: Often, a pediatrician may not be familiar with something as complex as Rett ...

Paige Nues provides her closing thoughts regarding the treatment management of Rett syndrome. Paige Nues: We have never felt more optimistic than [at] any time in the Rett syndrome’s history in terms ...

Rett syndrome is one of the rare genetic disorders and almost exclusively affects girls. In Germany, an estimated 5,000 people are affected, with about 50 new cases each year. A disturbing sign: After ...

The son of NBC News chief correspondent Richard Engel, Henry Engel died eight months ago at age 6 — but he's still at the center of the research that will hopefully prevent other children from losing ...

In July, President Donald Trump signed the One Big Beautiful Bill Act into law, bringing cuts of around $1 trillion to ...

When evaluating the significance of some intervention, randomized-control trials are our gold standard. However, randomized-control trials are usually constrained by time and hindered by some bias. In ...

AUDREY: WHEN IT COMES TO THEIR CHILDREN, THERE AREN’T MANY THINGS A PARENT WOULD NOT DO TO ENSURE THEY ARE HAPPY AND CARED FOR. CHRISTINA: ONE FAMILY IN OUR AREA IS DOING SO NOT ONLY FOR THEIR ...

Ella Frank, 15, has battled lifetime to challenges from rare neurological disorder. Her parents must replace special van to ...