Rare Diseases Day

Rare Diseases Day

Today is Rare Diseases Day.  Every year since 2008, a day has been set aside to acknowledge what are also known as “orphan diseases”- one of the 6000 diseases- that affect less than 1 in 200000 people at any given time.  50% of these diseases first affect children while the other half affect adults, so people at any phase of life can be affected by one of these diseases, and sometimes without any prior warning.  While 80% of the diseases are genetic or inherited, the other 20% have environmental, infectious, or other origins.  Additionally, because little is even known about many of these diseases, care for patients is often inadequate.  That is why the theme for this year’s Rare Diseases Day is “Care – let’s Join Together for Better Care.”

There are events going on worldwide, including many throughout the United States, to raise awareness about these many diseases that recieve very little or no research funding.  I encourage everyone to take some time to browse the Rare Diseases Day website to learn more, if you cannot make it to an event today.  I learned a lot just in the process of writing this post!  It’s important, for the families impacted by these diseases, that more people are aware of them and showing their support for improving care and treatment. While I don’t have a personal connection to a rare disease, as a scientist and even moreso, as a human, I think every disease deserves awareness and support, no matter how many people it affects.

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2 thoughts on “Rare Diseases Day

  1. I had viral myocarditis in July of last year which led to total heart failure requiring a transplant. The hospital I stayed in is one of the best places to go for this and they only see maybe 5 cases a year… I signed off to let them do research on my explanted heart, and while they were poking around in it they found I have Arrhythmogenic right ventricular cardiomyopathy, which is another rare heart condition. Lucky me, right? I hope they can find out some new stuff using my old busted heart!

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    1. Wow! Glad you are okay- I took a look at your blog and that sounds so scary! I think it’s awesome that you are letting them do research on your heart though because that’s really the only way to move forward in learning about these diseases.

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