CHIEF CHAT: Leading the way in rare disease advocacy

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A father and daughter, 16-year-old Jona and Luka Kobler, set out from the Izola marina in pursuit of a Guinness World Record. They plan to sail 400 miles in a four-meter dinghy without stopping on land and without the help of an escort vessel. The feat, which they have named Jonuka 400, is not only of a sporting nature, but also aims to raise awareness about a rare and dangerous disease – pulmonary arterial hypertension.