Today is rare disease day. Ehlers-Danlos syndrome is classified as a rare disease, with an incidence of approximate 1 in 10,000 (depending on which type you have, what study you read, etc). There are literally thousands of these diseases that, because they are rare, receive little recognition and even less funding for research. As a scientist, I know as well as anyone that money only goes to popular causes. Until we find more scientists, research centers and funding sources willing to invest is researching these diseases, any advance in diagnosing, treating or curing will be by pure luck. Just because these diseases don't affect millions of people doesn't mean that they don't need to be cured.
Just my two cents, as a mother, patient and geneticist.
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