Leukodystrophy - Symptoms, Causes, Treatment | NORD
Leukodystrophy - Symptoms, Causes, Treatment | NORD
Nov 20, 2023
rarediseases.org
Boy's story sheds light on struggle with rare disease
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Boy's story sheds light on struggle with rare disease
Feb 27, 2019
CBS News
Today is Rare Disease Day! Did you know children make up half of all patients diagnosed with a rare disease? As of today, more than 7,000 different rare diseases have been identified. With so many patients with rare diseases seen by our doctors and studied by our researchers, every day feels like rare disease day. Read and share these facts to help raise awareness and educate others about rare diseases. | Children's Hospital of Philadelphia
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Today is Rare Disease Day! Did you know children make up half of all …
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FacebookChildren's Hospital of Philadelphia
3.2K views · 55 reactions | Rare disease aren’t as rare as some might think. In fact, there are over 7,000 types of rare diseases – and one in three kids admitted to BC Children’s Hospital has one. Thankfully, researchers on our campus are on a mission to uncover the secrets of rare diseases and help kids live full lives. #RareDiseaseDay #ShowYourRare | BC Children's Hospital Foundation | Facebook
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3.2K views · 55 reactions | Rare disease aren’t as rare as some mi…
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FacebookBC Children's Hospital Foundation
3.7K views · 70 reactions | Treating children with rare diseases “is more than a job,” says Jerry Vockley, MD, PhD, director of the Center for Rare Disease Therapy. “You do it because you can’t imagine doing anything else.” Listen to Dr. Vockley talk about his approach to treating children with rare diseases as we celebrate Rare Disease Day 2019. #ShowYourRare #RareDiseaseDay | UPMC Children's Hospital of Pittsburgh | Facebook
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3.7K views · 70 reactions | Treating children with rare diseases “is mo…
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FacebookUPMC Children's Hospital of Pittsburgh
2.2K views · 91 reactions | The Zayed Centre for Research into Rare...
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2.2K views · 91 reactions | The Zayed Centre for Research into Ra…
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FacebookGreat Ormond Street Hospital and Charity
🦋 Part 1/3: "Both my sons have Molybdenum Cofactor Deficiency Type A. But their journeys are very different."-Hanan Dahab, Mother Meet Jeyad and Ghaith and watch as we share their journey with this rare disease. Learn more about the Fetal Center at Nationwide Children's: https://bit.ly/3UnvFOf #RareDisease #NCHFetal | Nationwide Children's Hospital
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🦋 Part 1/3: "Both my sons have Molybdenum Cofactor Deficiency …
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21K views · 240 reactions | 曆 Part 2/3: Ghaith was diagnosed with...
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1.9K views · 23 reactions | Did you know that 75% of rare diseases...
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New rare disease discovered in teen brothers at BC Children’s Hospital
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5K views · 47 reactions | Einstein’s Gene Team brings together...
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Only 30 children have been diagnosed with this rare genetic di…
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70K views · 461 reactions | My son has a very rare disease - it makes l…
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8.3K views · 138 reactions | Even with rare disease day being cancel…
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29 reactions · 14 shares | Rare disease is draining the life out of …
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More than 400 million people worldwide live with a rare disease…
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FacebookDavid Cameron
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Only 70 people in the world have this rare gene mutation. Two of th…
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