Prince Frederik of Luxembourg Passes Away at 22 Due to Rare Genetic Disorder

Prince Frederik of Luxembourg's untimely passing at the age of 22 marks a profound loss not only for his family but also for the broader community advocating for rare diseases. Diagnosed with POLG mitochondrial disease at the age of 14, Frederik faced a relentless and debilitating condition that progressively diminished his health . Despite this adversity, he exhibited remarkable resilience and maintained a positive outlook throughout his life. His dedication to raising awareness about POLG culminated in the establishment of the POLG Foundation, which aims to advance research into this rare genetic disorder affecting energy production within cells .

Frederik died on March 1 from the rare genetic condition POLG Mitochondrial disease, his father announced in a heartfelt message posted on the website for the POLG Foundation, an organization founded by Frederik to help find treatments and a cure for the illness.

Detailing that Frederik "called us in to his room to speak to him for one last time" on what marked “Rare Disease Day” on Feb. 28, the royal explained that his son "found the strength and the courage to say goodbye to each of us in turn — his brother, Alexander; his sister, Charlotte; me; his three cousins, Charly, Louis, and Donall; his brother-in-law, Mansour; and finally, his Aunt Charlotte and Uncle Mark."

POLG disease is a mitochondrial disorder caused by inherited mutations in the POLG gene—which is critical to the processes of replicating cells’ genetic material and DNA repair. The disease, which has no cure, affects multiple organs, including the brain, nerves, muscles, and liver, and symptoms can be wide-ranging and debilitating. “One might compare it to having a faulty battery that never fully recharges, is in a constant state of depletion and eventually loses power,” Robert wrote.

Prince Frederik had voiced his gratitude for having his disease over the years. And it was recently found out that he once had told a close friend (unbeknown to Frederik’s family until now): “I am glad that I am the one who was born with this disease. Even though I’ll die from it …. and even if my parents do not have the time to save me, I know that they will be able to save other children.”

Frederik's contributions as a creative director for the foundation exemplified his commitment to advocacy despite personal challenges. His efforts have been instrumental in mobilizing resources for research initiatives aimed at finding treatments . Moreover, he inspired many by fostering hope and community among individuals affected by similar conditions. The impact of his legacy is evident in the ongoing work of the POLG Foundation and its mission to combat this devastating disease .

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Sarah H

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