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Rare Disease Day

wonderfulMagic99 February 29th, 2016

Since 2016 is a leap year, rare disease day is on Feb 29, as how could one pick a better day to raise awareness for something that's rare?

The definition of a rare disease can vary by country, and something that might be fairly uncommon in one country may be much more prevalent in another. The thing that is shared with those who are classified is having a rare disease is often difficulties getting diagnosed and/or getting appropriate treatment. Treatment for rare diseases is often limited and medications as well as treatments may be very expensive.

Rare diseases as a group aren't all that rare! For example, it's estimated 30 million EU citizens have a rare disease and some organizations estimate prevalence can be as high as 1 in 10.

Many rare diseases are genetic. Children are more highly represented in these statistics, due to a high mortaility rate with some rare diseases at young ages. For example, in Canada 2/3 of those with a rare disease are children.

In Europe a rare disease is one that affects less than 1 in 2000.

In the US it's defined as one that affects less than 200,000 people in that country.

For more events related to this day on 7 cups see:

https://www.7cups.com/forum/SpecialEventson7Cups_120/2016SpecialEventson7Cups_757/February29thRareDiseasesDay_37339/

To find out more about Rare Disease Day, including events around the world:

http://www.rarediseaseday.org/

Rare Disease Organizations:

http://www.eurordis.org/ (Europe)

http://rarediseases.org/ (US)

https://www.raredisorders.ca/ (Canada)

https://www.rarevoices.org.au/ (Australia)

http://www.i-ord.org/ (India)

1
Dillion March 2nd, 2016

Thanks for the resources!