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Jared Whitlock of Kaiser Health News

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COURTNEY BOGGS, A MEMBER OF THE CURE MITO FOUNDATION, WITH HUSBAND JACOB AND DAUGHTERS EMMA (LEFT) AND RILEY. EMMA, 6, WHO HAS LEIGH SYNDROME, CAN'T WALK WITHOUT ASSISTANCE AND EATS THROUGH A FEEDING TUBE. THE FOUNDATION HAS BEEN WORKING FOR A TREATMENT, BUT THE COMPANY IT PARTNERED WITH HAS PAUSED ITS WORK ON IT./RANDY BOGGS/KHN

Parents Become Drug Developers To Save Their Children’s Lives

Some families are forming their own biotech businesses to help their children, acting as drug developers to find treatments for ultra-rare diseases that affect 1,000 patients or fewer.
Jul 26, 2022