Rare Diseases are common - Adam & Lea vs Sanfilippo
Learn more about rare diseases, try out our quiz! You can learn more about us on: www.adamlea.eu, www.sanfilippo.org.pl, www.sanfilippoinitiative.org
You definitely should know someone with rare disease, they affect around 7% of the population.
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Rare disease is defined in the same way globally, as a diseases that affects less than 1:2000 newborns.
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80% of rare diseases are genetic in origin.
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30% of children with rare disease will not live to see their 5th birthday.
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It is estimated that 350 million people worldwide suffer from rare diseases and around 30 million in the European Union alone.
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Diagnosis of a rare disease is relatively simple, as it is characterised by unique symptoms, that are uncommon for other diseases.
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There are more Americans who live with a RARE DISEASE than ALL of those who have either HIV, Heart Disease or Stroke.
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95% of rare diseases have no approved treatment.
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The prevalence distribution of rare diseases is skewed – 80% of all rare disease patients are affected by approximately 350 rare diseases.
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Adam & Lea suffer from MPSIII
1 point
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