- Frederik was diagnosed with the rare POLG disease at age 14
- He passed away the day after Rare Disease Day
- Frederik supported POLG awareness and research
At the age of 14, Frederik was diagnosed with POLG, a rare disease that affects multiple organ systems and manifests in a broad range of symptoms, making it challenging to diagnose, according to his family.
Frederik passed away the day after Rare Disease Day, a global observance aimed at raising awareness about rare diseases. It is estimated that 300 million people worldwide live with such conditions.
“As with the 300 million people like Frederik across the globe, these diseases are often hard to identify, even by doctors, and families may never know the cause of their loved one’s suffering until it’s very advanced,” said his father, Robert.
Currently, there is no cure or treatment for POLG.
“One could liken it to a malfunctioning battery that never recharges fully, staying in a constant state of depletion until it eventually runs out of power,” Robert explained.
“Frederik and the POLG Foundation are committed to finding therapies and a cure to spare other families from the pain and suffering we’ve experienced,” he added.
Despite his condition, Frederik found the strength and courage to bid farewell to his loved ones: his brother Alexander, sister Charlotte, father, three cousins—Charly, Louis, and Donall—brother-in-law Mansour, and Aunt Charlotte and Uncle Mark, as his father shared.
“Although Prince Frederik always made it clear that he didn’t want the terrible disease to define him, he dedicated himself to raising awareness about rare diseases,” the family said. He also participated in medical trials, hoping to find treatments and perhaps even repurpose existing molecules to help others with the same condition.
Frederik’s father, Robert, is a first cousin of Grand Duke Henri of Luxembourg, the current head of state, and is 15th in line for the throne.
