Latest news with #RareDiseaseDay
Yahoo
11-03-2025
- Entertainment
- Yahoo
Royal Family Member Dead at 22 From Rare Disease
Prince Frederik—the son of Prince Robert of Luxembourg, the first cousin of , the current ruler of Luxembourg—died at the age of 22 in early March after living with PolG mitochondrial disease all his life. The sad news was announced by Robert in a blog post on the website for The POLG Foundation, a nonprofit foundation founded by Frederik's family after his diagnosis in 2016. 🎬 🎬 "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," began the message. "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." Robert recalled Frederik's emotional goodbyes to himself, his brother Alexander, his sister Charlotte, his cousins and more family members, noting, "He had already spoken all that was in his heart to his extraordinary mother [Julie], who had not left his side in 15 years." He went on to share Frederik's last question to him, "Papa, are you proud of me?" with Robert sharing, "The answer was very easy, and he had heard it oh so many times…. but at this time, he needed reassurance that he had contributed all that he possibly could in his short and beautiful existence and that he could now finally move on." Calling his son "my Superhero," Robert said, "Frederik fought his disease valiantly until the very end. His indomitable lust for life propelled him through the hardest of physical and mental challenges. Our cheery Frederik saw the beauty in everything." Frederik died on March 1, in Paris, France. A fan page for the Luxembourg royal family also shared the news of his death and part of Robert's tribute on social media. View the to see embedded media. The blog post shared details about Frederik's illness, noting that he lived his whole life with the disease despite the late diagnosis. According to the organization's website, PolG mitochondrial disease is "a genetic disorder that robs the body's cells of energy, in turn causing progressive multiple organ dysfunction and failure." Currently, the condition is "very difficult to diagnose and has no treatments much less a cure." The POLG Foundation is working to find therapies, treatments, and hopefully a cure to help those suffering from the disease. Next:
South China Morning Post
10-03-2025
- Health
- South China Morning Post
Who are Princess Charlotte and Prince Alexandre of Nassau, who just lost their brother Frederik? The Luxembourg royals are mourning the death of their sibling, and will carry on his NGO work
Prince Frederik of Luxembourg, the youngest son of the Prince and Princess of Nassau, has died after a long battle with POLG mitochondrial disease, a rare genetic disorder. The 22-year-old's death was announced by his family on March 7 on the POLG Foundation website, started by Frederik in 2022. '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,' his father, Prince Robert of Luxembourg, wrote. Advertisement His family said Prince Frederik 'fought his disease valiantly until the very end'. Photo: @polgfoundation/Instagram 'Last Friday, February 28, on 'Rare Disease Day', our beloved son called us in to his room to speak to him for one last time. Frederik found the strength and the courage to say goodbye to each of us in turn – his brother, Alexandre; his sister, Charlotte; me,' the bereaved father continued. 'He had already spoken all that was in his heart to his extraordinary mother, who had not left his side in 15 years.' According to the foundation's website, POLG mitochondrial disease 'is a genetic mitochondrial disorder that robs the body's cells of energy, in turn causing progressive multiple organ dysfunction and failure'. 'Frederik's last question to me, before his other remarks, was: 'Papa, are you proud of me?' He had barely been able to speak for several days,' the heartfelt statement continued. The late Prince Frederik (left) and his siblings, Princess Charlotte and Prince Alexandre. Photo: @polgfoundation/Instagram 'As his siblings and most anyone who ever met him say, 'Frederik is the strongest person that we know!' Frederik fought his disease valiantly until the very end.' Here's everything to know about the late prince's older siblings, Princess Charlotte and Prince Alexandre. Who is Princess Charlotte of Nassau?
Yahoo
10-03-2025
- Entertainment
- Yahoo
Prince Frederik of Luxembourg's Dad Details His Final Moments
Originally appeared on E! Online Prince Frederik went into his final moments with intention. After the 22-year-old prince of Luxembourg tragically died March 1 following a battle with PolG mitochondrial disease, a rare genetic disorder, his father Prince Robert—who shares Frederik, as well as kids Princess Charlotte, 29, and Prince Alexandre, 27, with wife Princess Julie—detailed his last hours. 'Last Friday, February 28th, on 'Rare Disease Day,' our beloved son called us into his room to speak to him for one last time,' Prince Robert wrote in a lengthy statement shared to the POLG Foundation website. 'Frederik found the strength and the courage to say goodbye to each of us in turn.' Following the prince sharing a goodbye to his direct family, as well as his cousins, the 56-year-old added that his son left the world by sharing one last joke. 'After gifting each of us with our farewells—some kind, some wise, some instructive—in true Frederik fashion, he left us collectively with a final long-standing family joke,' the prince, who is cousin to Grand Duke Henri of Luxembourg, continued. 'Even in his last moments, his humour, and his boundless compassion, compelled him to leave us with one last laugh—to cheer us all up.' More from E! Online It Ends With Us' Brandon Sklenar Addresses Reason Behind Wearing Same Pin as Justin Baldoni Luxembourg's Prince Frederik Dead at 22 After Battling Rare Genetic Disease Odell Beckham Jr. Responds to Rape Allegations After Being Named in Sean 'Diddy' Combs Lawsuit The Luxembourg royal also gave a bit of insight into his own final conversation with his son, adding, 'Frederik's last question to me, prior to his other remarks was: 'Papa, are you proud of me?'' And the prince emphasized just how proud he indeed was of his son prior to his passing. 'The answer was very easy, and he had heard it oh so many times but at this time, he needed reassurance that he had contributed all that he possibly could in his short and beautiful existence and that he could now finally move on,' Robert explained. 'Frederik knows that he is my Superhero, as he is to all of our family, and to so very many good friends and now in great part thanks to his POLG Foundation, to so very many people the world over.' Frederik had been diagnosed with POlG disease when he was 14, and his father described him as 'headstrong,' 'cheery,' and possessing an 'indomitable lust for life,' that helped him fight until the end. Prince Robert included a piece of advice that Frederik had written to himself in his phone, noting that it was one his entire family would begin to heed to keep his spirit alive, which read, 'Go outside when the sun is shining.' Keep reading for more royal news from around the world… Luxembourg's Prince Fredrik Dies at 22Prince Harry Reaches Settlement in U.K. Tabloids LawsuitKate Middleton Is in Remission After Finishing Chemotherapy for CancerMeghan Markle's Longtime Dog Guy DiesPrince William Mourns Death of Former Nanny's StepsonMeghan Markle Rejoins Instagram to Reveal New Netflix Show For the latest breaking news updates, click here to download the E! News App
Yahoo
10-03-2025
- Health
- Yahoo
Luxembourg's Prince Frederik dead from genetic disease at 22
(NewsNation) — Prince Frederik of Luxembourg has died at 22 from POLG mitochondrial disease, a genetic disorder he has had since birth. The family announced his death one day after Rare Disease Day, which is the last day of February. His father, Prince Robert of Luxembourg, posted a statement to the POLG Foundation website, which Prince Frederik founded in 2021 to raise awareness about the rare condition. Odell Beckham Jr. and Druski accused in assault with Diddy Prince Frederik was able to say his last goodbyes to his family, including his parents, siblings and cousins, after being able to barely speak for several days. 'He has social skills like no other, an amazing sense of humour, an emotional intelligence and compassion that were off the charts, a sense of justice, fairness and decency that knows no bounds,' Prince Robert said in the statement. Although Prince Frederik was born with POLG mitochondrial disease, he was not diagnosed until he was 14, when the illness progressed. The rare disorder affects multiple organ systems and is the most common inherited mitochondrial disease. It is named for the POLG gene, and there are more than 200 POLG mutations that can cause the disease. Vitamin A won't have 'any impact' on US measles outbreak: Doctor The POLG Foundation described the disorder as robbing cells of energy and comparing it to a battery that never fully charges, is constantly being depleted and eventually loses power. There is no cure for POLG diseases, though patients can be given treatment to help manage the symptoms. Up to 2% of people with Northern European heritage may carry POLG mutations. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
Yahoo
10-03-2025
- Health
- Yahoo
Prince Frederik of Luxembourg Dies at 22 From Rare Genetic Disorder
The royal family of Luxembourg is currently in mourning, as Prince Frederik of Luxembourg—the youngest son of Prince Robert of Luxembourg and Princess Julie of Nassau—has died at 22 from complications of a rare genetic disorder called POLG mitochondrial disease. Frederik's family announced the news of his passing via the POLG Foundation website—which he founded in 2022—on March 1, revealing that he died in Paris on February 28 from the condition. "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. Frederik 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," the family wrote in the statement. "He had already spoken all that was in his heart to his extraordinary mother, who had not left his side in 15 years. After gifting each of us with our farewells—some kind, some wise, some instructive—in true Frederik fashion, he left us collectively with a final long-standing family joke. Even in his last moments, his humor, and his boundless compassion, compelled him to leave us with one last laugh….to cheer us all up." The statement further revealed the details of Frederik's experience with POLG, noting that he was first diagnosed when he was 14 with his symptoms "Showing more clearly and when the progression of his disease had become more acute." The family explained that POLG affects multiple organ systems and has no treatment options or cure, adding that it is a "genetic mitochondrial disorder that robs the body's cells of energy, in turn causing progressive multiple organ (brain, nerves, liver, intestines, muscles, swallowing and ocular function, etc.) dysfunction and failure. One might compare it to having a faulty battery that never fully recharges, is in a constant state of depletion and eventually loses power." The family thanked the POLG community for their support, and expressed a desire to continue the research that Frederik's foundation has started in order to one day find a cure to the disease. "With our superhero's help we hope to turn our deep grief into positive results and therewith follow his unwavering example," the statement concluded. "His ultimate message is one of hope, compassion, and resilience! We are all so very proud of you, love you!" Read the original article on InStyle
