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Rare Disease Challange


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Rare disease awareness day was recently (I'm a little slow on the draw by about a month), but it got me to thinking, with another awareness day coming up for a disease, why not issue a challenge to raise awareness of rare diseases?

I am currently writing a story with a friend to help raise awareness for Hereditary Angioedema which has such a long road to diagnosis for so many people, and the emergency rooms, many don't know how to treat it. Many a doctor has never heard of it, or they only hear the "AngioEdema" instead of the whole name, which they are two different monsters.

Raising awareness to rare diseases will help people on the road to diagnosis, and remove some of the road blocks to treatment.

My challenge to my fellow writers:

Write a story with a rare disease (Many of which are genetic). Do research, and learn about the chosen disease and treatments. This will be especially helpful to you or your loved ones if the rare disease runs in your family. Can't come up with a rare disease? Go ahead and use a more common one (or look up orphan diseases on wikipedia), but the point is, to raise awareness of the disease.

If you choose to write about a disease which is genetic, I recommend having at least two characters with the disease. You don't have to, but it is what I recommend. The characters may be nearly asymptomatic until a certain point in the story. Just remember, with rare diseases, including genetic ones, the road to diagnosis is usually long and hard, with many a misdiagnosis given.

And although rare diseases are a very serious issue in the world today, please, try to have fun learning and writing about them.

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