Prince Frederik, the son of Prince Robert of Luxembourg, tragically passed away at age 22 after battling POLG mitochondrial disease, a rare genetic disorder, throughout his life. His death occurred in Paris, France, on March 1, 2025, a day after the global observance of Rare Disease Day.
The heartbreaking announcement was made by Prince Robert, first cousin of Grand Duke Henri, the reigning monarch of Luxembourg. He shared the news in a deeply personal blog post on The POLG Foundation’s website, a nonprofit organization established by his son following his 2016 diagnosis.
“It is with a very heavy heart that my wife and I would like to inform you of the passing of our son, The POLG Foundation Founder and Creative Director, Frederik,” started the heart-rending message from Prince Robert.
Frederik was diagnosed at the age of 14 with POLG mitochondrial disease when his symptoms became more evident. Despite this life-altering diagnosis, he displayed exceptional resilience and fervor, dedicating his life to creating awareness and advocating for treatments for the disease.
This rare genetic disorder, POLG mitochondrial disease, gradually deprives the body’s cells of energy, leading to progressive multiple organ dysfunction and ultimately failure. The disease primarily affects the mitochondria, the energy-producing components of the cells, with potential harm to various body organs including the brain, nerves, muscles, and liver.
As per the information on the POLG Foundation’s website, this disease is estimated to afflict one in every 10,000 individuals. There is currently no known cure or effective treatment for POLG mitochondrial disorders.
In 2022, Frederik co-founded The POLG Foundation with a mission to support research for effective treatments and ideally find a cure for POLG mitochondrial disorders. As the foundation’s creative director, he played a pivotal role in securing $3.6 million in research funding and forging a partnership with Columbia University to develop tools for assessing disease progression.
Frederik’s own DNA was a valuable asset in advancing scientific understanding of POLG and mitochondrial research, contributing to knowledge that could potentially be significant in the study of other diseases such as cancer and neurodegenerative disorders.
In his blog post, Prince Robert recounted his son’s final moments. He narrated how Frederik gathered the strength to bid farewell to each family member.
“Last Friday, February 28th, on ‘Rare Disease Day’, our beloved son called us in to his room to speak to him for one last time,” Prince Robert noted, adding that Frederik had a heartfelt conversation with his mother, Princess Julie, “who had not left his side in 15 years.”
Prince Robert also paid tribute to his son’s exceptional social skills, humor, and resilience. He described Frederik as a “Superhero” not only for the family but also for many others battling POLG across the globe.
Despite the endless hurdles he encountered throughout his life, Frederik remained optimistic and was renowned for his sense of fairness and compassion.
Frederik leaves behind his parents, Prince Robert and Princess Julie, and his siblings, Prince Alexander and Princess Charlotte, to whom he bid an emotional farewell before his passing.
Prince Robert stated that Frederik’s mission is far from over, even after his passing. The family intends to continue the work of The POLG Foundation to discover a cure for POLG mitochondrial disease, aspiring to rescue other patients from suffering Frederik’s fate.
Research on POLG disease could have broader implications, hopefully informing the development of treatments for a variety of other diseases, including Alzheimer’s, Parkinson’s, diabetes, heart diseases, depression, and certain types of cancer.
Medical experts acknowledge that POLG-related disorders encompass a spectrum of overlapping phenotypes with onset ranging from infancy to late adulthood. The most severe forms, such as Alpers-Huttenlocher syndrome, typically manifest in childhood, while milder forms may not become apparent until adulthood.
The early symptoms of POLG mitochondrial disease can be elusive and difficult to detect, contributing to challenges in diagnosis and treatment. Patients with the condition often face an uncertain future as they witness their own progressive loss of function.
For those impacted by POLG, the work initiated by Prince Frederik through his foundation offers hope for future treatments and potentially a cure, ensuring that his legacy carries on far beyond his brief 22 years of life.
