life with a rare disease - Rare Diseases International
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life with a rare disease - Rare Diseases International
What is a rare disease - living with a rare disease
Feb 25, 2023
Rare Disease Stories
'Shaped my family’s life': Your rare disease stories
9:59
'Shaped my family’s life': Your rare disease stories
CNBCBrad Quick
2 weeks ago
Stars bravely sharing rare disease stories in 2025! #CelebHealth #OliviaNewtonJohn #SelenaGomez #LadyGaga #Awareness2025 | Star Moment
0:26
Stars bravely sharing rare disease stories in 2025! #CelebHealth #OliviaNewtonJohn #SelenaGomez #LadyGaga #Awareness2025 | Star Moment
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9.8K views2 months ago
121K views · 1.1K reactions | 7-year-old Luciana Wilken has fibrodysplasia ossificans progressiva (FOP), a very rare genetic disorder causing muscles and tendons to turn into bone. A mother recounts the moment she connected her daughter's symptoms to this rare disease after watching a documentary. It was like a jigsaw, she says, putting all the pieces together. #FOP #GeneticDisorder #RareDisease #MedicalMystery #Inspiration #Hope | Real Stories | Facebook
1:22
121K views · 1.1K reactions | 7-year-old Luciana Wilken has fibrodysplasia ossificans progressiva (FOP), a very rare genetic disorder causing muscles and tendons to turn into bone. A mother recounts the moment she connected her daughter's symptoms to this rare disease after watching a documentary. It was like a jigsaw, she says, putting all the pieces together. #FOP #GeneticDisorder #RareDisease #MedicalMystery #Inspiration #Hope | Real Stories | Facebook
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71.3K views4 weeks ago
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