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December 17, 2010
1 person found this review helpful

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Review from Guidestar
December 17, 2010
1 person found this review helpful

I suffer from Behcets Disease. I was first diagnosed almost 19 years ago. This is an orphan disease. Less than 20,000 Americans have this disease. Most doctors don't even know about it, and I lived in NYC! This organization practically saved my life. They helped me with information, doctors, medications, support groups... I just can't say enough good things about them! I have watched them grow over the last two decades. Their members go to international conferences and bring back information from all over the world to help Americans. The organization is mostly volunteer run.

The Great!

I've personally experienced the results of this organization in...

Finding new doctors, reading their quarterly newsletter and giving that to my doctors to help them understand Behcets disease.

Ways to make it better...

If I had to make changes to this organization, I would...

give them more money so they could go to countries where this disease is more prevalent (Turkey, Asia) so they could study it in more detail and bring back more information. In America, we don't necessarily fit the mold (ie. in America it affects more women then men, in the rest of the world it affects more men then women)

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

The CDC in Atlanta, GA.

What, if any, change in your life has this group encouraged?

I'd probably be dead from this disease if I had not found this organization.

When was your last experience with this nonprofit?

2010

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