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Rare Disease Day

Yesterday, 2/28 was International Rare Disease Day.  Most rare diseases are genetic, chronic,  serious, and debilitating.  You can watch the 2014 video below, as well as check out the Rare Disease website here and find out if your disease is rare.



My rare disease is Cushing's Disease.  I am a survivor of Cushing's Disease.  Many of these rare diseases are treated in help with the Orphan Drug Act, which gives pharmaceutical companies grants to develop drugs that can help people with rare diseases.  You can read more about the Orphan Drug Act here.

Unfortunately, I did not do a whole lot to raise awareness of Rare Disease Day this year.  Of course, I shared this video and posted some information on Facebook, but I did not talk about it much. Part of that reason was work, I am trying to limit talking about Cushing's and everything else going on medically.  Many people have different opinions on what is going on and what you should do about it and it's become an issue where people will criticize my decision making, or give advice that I don't need.  (Most people who have a chronic illness with experience this.  What worked for a friend with a completely different disease and circumstances will not work for me!)

I hope you all have a great weekend, I'll be back next week with more information on my Cushing's talk at Harvard Medical School!

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