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Rare Disease Day 2024

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There's an old saying in medicine, "When you hear hoofbeats, think horses, not zebras." I.e., think of common causes, not rare ones.  BUT:

  • Rare is not rare! While each individual disease may affect only a small number of patients, taken together rare diseases affect more people than cancer and AIDs combined

  • 1 in 10 Americans and 300 million people globally suffer from a rare disease

  • 50% of these patients are children, and many of them won't live to see their 5th birthday

  • There are over 10,000 different rare diseases, and 80% have a genetic cause

  • Rare genetic disorders are often the underlying cause for common conditions like epilepsy, autism, and intellectual disability

  • Many rare diseases are fatal, life-threatening, and/or profoundly disabling, and 95% have no treatment

  • Rare diseases represent a global health crisis; the technology now exists to develop treatments/cures, but the funding doesn't, due to small patient populations, so it is often left to families and small foundations to raise the money for research and drug-development

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Cure KCNH1 Foundation is working with local biotech companies and national and international organizations and researchers to develop cutting-edge treatments that can help not only Tristan and the other KCNH1 kids, but millions of other rare-disease patients. Please watch the video to learn more about KCNH1, and consider donating today to make a difference in the lives of these severely-disabled kids!

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