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8-year-old Victor was diagnosed with Coffin-Lowry Syndrome, a rare disease that affects his mental and physical development. We travelled to Romania to hear about the family’s harrowing journey to find answers. Watch the full report: https://bit.ly/43HgstE #SmartHealth w/ European Commission #EUPharmaStrategy | Euronews Next
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Fighting for a diagnosis ✊ In this month’s episode of #EurordisRareOnAir, we hear from Iuliana Dumitriu, the mother of Victor, an eight-year-old boy living with Coffin-Lowry Syndrome in Romania. Iuliana shares with host ulien Poulain the story of her family’s torturous, yet determined, seven-year journey toward receiving a diagnosis for Victor. Unfortunately, Iuliana’s story is all too common across the rare disease community. Reflecting on Iuliana’s story, Julien also speaks to EURORDIS Social
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“C’est 42 km pour tout le monde.” 🏃 Éric, atteint du syndrome de Coffin Lowry depuis l'âge de 3 ans, a réalisé son rêve de participer au marathon de Paris aux côtés de sa mère et d'une équipe de pousseurs. Grâce à l'association "Handirection du bonheur d'Éric", créée il y a un an, et à son parrain Franck, ils ont récolté les 4400€ nécessaires pour financer l'achat d'une joelette, indispensable pour parcourir les 42 km. Après un entraînement intensif, Éric et ses pousseurs ont bouclé le marathon
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Day 5 of the coffin siris syndrome community challenge! Today is “a big milestone” so naturally I’m resharing this reel of one of his more recent milestones. 🥹🩵 #coffinsirissyndromeawareness #coffinsirissyndrome #raredisease #geneticdisorder #raisingrare @coffin_siris_foundation | Momlifewithmara
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7 days left to shout love for Stella, Auron Ruby!🎉 These three amazing kids have found each other through a shared rare diagnosis journey with Coffin-Siris Syndrome (CSS). Throughout the month, we’ve been sharing Auron, Ruby and Stella’s story to help raise awareness for CSS. Every purchase this month will help with the cost of adaptive bicycles for Ruby and Stella, and a special trip for Auron with his family. Visit www.goshout.love to learn more about their story. #goshoutlove #shoutloveforAu
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