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Does anyone have Birt-Hogg-Dubé syndrome (BHD), genetic lung disease?

Lung Health | Last Active: Jul 5 12:00pm | Replies (26)
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@michavril

I am in Texas and I have reached out to everyone from the BHG website has on there website with no luck.

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dc1950 | @dc1950 | Sep 15, 2022

Hello, The Facebook page is information for those with BHD, basically sharing info and any news on BHD. May I ask what you are looking for? If you are looking for testing, I would recommend contacting Mayo Minnesota Genetic Department. I saw Marine Murphree, Geneti Counselor and Dr. Pavel Pichurin at Mayo Minnesota. Hope that helps.

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cathleenc | @cathleenc | Oct 22, 2022

I was referred to Baylor Med from my dermatologist in 2007. At that time, they were only able to put me in touch with one other woman who also had BHD in all of Houston. Also, back then there were only two labs in the US who did the genetic testing.

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