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Rare Disease Day 2025
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:
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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
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1 in 10 Americans and 300 million people globally suffer from a rare disease
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50% of these patients are children, and many of them won't live to see their 5th birthday
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There are over 10,000 different rare diseases, and 80% have a genetic cause
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Rare genetic disorders are often the underlying cause for common conditions like epilepsy, autism, and intellectual disability
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Many rare diseases are fatal, life-threatening, and/or profoundly disabling, and 95% have no treatment
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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
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!
Contact Us
We're always looking for support for our mission.
Let's connect!
619-742-0013
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