Prince Frederik of Luxembourg, who bravely battled POLG mitochondrial disease and founded a foundation for its research, passed away in Paris at the age of 20, one day after Rare Disease Day.

His death highlights the ongoing struggle against POLG mitochondrial disease, a rare and debilitating genetic disorder that leads to severe organ dysfunction and currently has no cure. Frederik's establishment of the POLG Foundation in 2022 was a testament to his determination to advance research and bring hope to others facing similar challenges, underscoring the urgent need for awareness and funding in the fight against rare diseases.

The announcement of Prince Frederik's passing was made on the POLG Foundation's website, a platform established by Frederik himself to advocate for research and support for those affected by POLG mitochondrial disease. This rare genetic disorder occurs due to mutations in the POLG gene, leading to dysfunctional mitochondrial function, which in turn impacts the body's energy production and can result in a cascade of organ failures.

Frederik's lifelong struggle with POLG began at birth, but it wasn't until he turned 14 that he was officially diagnosed. This delay in diagnosis is not uncommon for the disorder, which is often difficult to identify due to its wide-ranging symptoms that can mimic other conditions. The impact of this rare disease is profound, as it robs individuals of their cellular energy, culminating in debilitating health challenges.

On the day prior to Frederik's death, which fell on Rare Disease Day, discussions surrounding awareness of such conditions gained significant attention globally. The timing of his passing adds a poignant layer to the ongoing efforts to elevate understanding of rare diseases that affect countless individuals and families worldwide.

Family members shared intimate details regarding Frederik's final moments. His brother Robert revealed that Frederik made an effort to communicate with loved ones, asking his father, 'Papa, are you proud of me?' This moment exemplified Frederik's deep connection with his family and his quest for validation, reflecting both vulnerability and strength during his trials.

Described as a 'Superhero' by his brother, Prince Robert, Frederik was known for his remarkable positivity and determination despite the immense challenges posed by his condition. His vibrant spirit shone through even at the end of his life, as he was remembered fondly for his humor and compassion towards others.

Frederik's involvement in the medical community was notable; he participated in medical trials and generously donated his DNA to further research on POLG mitochondrial disease. His contributions not only aided medical professionals in their quest for a better understanding of the disorder but also aimed to pave the way for potential treatments and a future cure—an endeavor that remains critically important given the current absence of effective therapies.