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Townes Brock Syndrome

(5 Posts)
massivepants Mon 11-Jan-10 12:26:26

Has anyone heard of this, does anyone's child have it? I think my son does, he was born without a hole in his bottom, and has moderate hearing loss and wears hearing aids.

Lauree Mon 11-Jan-10 21:39:40

Haven't heard of it, but try posting on the special needs boards here.
Contact a family's website is usually good for rare disorders YOU might even be able to contact the Dr's who originally identified the syndrome.

My son has a rare genetic condition (not as rare as this one though) and I found an online support group based in america.

Good luck x

Julesc36 Tue 12-Jan-10 06:08:11


Yes I do know about the Townes Brock Syndrome. It is a very rare syndrome, but I am the founder of the Townes-Brocks-Syndrome Support Group and have other mums and dads who will be able to help you with many of your questions. Please feel free to join our private group

You may also copy and paste the address to a new browser and delete any blank spaces if they occur.}


massivepants Tue 12-Jan-10 20:24:42

thanks for replying............Julesc36, I will get in touch. thanks

AlexIsTalented Fri 02-Sep-11 19:34:19

I dont have any kids because im only 15 but I have it. And I would really like to speak to someone else who has it.

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