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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 www.cafamily.org.uk/index.php?section=861 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

Hello,

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
[{http://groups.yahoo.com/group/Townes-Brocks-Syndrome/join}]

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

Regards,
Julesc36
jules36_2000@yahoo.com

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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