Author
John Nguyen
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Author
John Nguyen
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Unsurprisingly, rare diseases are, well, rare. But what does this actually mean? According to the National Institute of Health, a rare disease is classified by a disease that affects less than 200,000 people at once in the United States. Since these diseases are uncommon, there is an official holiday to raise aware called “Rare Disease Day.” This holiday happens at the end of February, usually on February 28th, but it truly occurs on a Leap Year, on February 29th, to emphasize the “rare” part of the name.
What is Rare Disease Day?
Rare Disease Day is actually observed worldwide, not just in the United States. In fact, the day was actually created in Europe, of the year 2008, by the group EURORDIS, also known as the European Rare Disease Organization. In the United States, the group that normally spreads awareness for this day is NORD, the National Organization for Rare Disorders. Of course, the idea of rare diseases started way long before that, and NORD is currently over 40 years old.
It Doesn’t Feel Rare
The amount of people living with a rare disease totals to around 300 million. That seems like a lot, until you remember that there are over 7.8 billion people on Earth. In other words, there are less than 5% of people that have a rare disease. Of those 300 million, about 10% of them are people from the United States. Though that number may slightly go up, as new diseases are found. Currently, there’s at least 10,000 rare diseases affecting Americans. You can find a list of rare diseases on NORD’s database, or through NIH’s database.
Few Treatment Options
Unfortunately, a large portion of the rare diseases are genetic. This means that one generation may pass it off to the next. Other diseases may be those that suddenly appear during lifetime. Some rare diseases you may have heard of might be a type of cancer, like breast, or colon cancer. When you think of cancer, you think of few treatment options, hence why we are so afraid of cancer. The same could be said for other rare diseases. Many of them have little to no treatment options available. As such, there are people out there trying to find as many cures as possible, like those researching Therapeutics for Rare and Neglected Diseases.
Conclusion
Visit the official Rare Disease Day Website to learn how you can spread awareness on rare diseases. If you know anyone that has a rare disease, ask them how you can be of assistance, or how to accommodate their needs. New diseases are being found day by day, and staying up to date on some of the rare diseases could prove beneficial.
