Hi,
My name is Fran, I live in Sydney Australia and I have a 2 year old daughter who was diagnosed with TRAPS this year. My family and I have found the Children's Inn discussion board very helpful, especially as there is such a lack of information about this condition.
I note that the Children's Inn discussion board is for "individuals enrolled in a TRAPS study at the NIH and their family members." As a way of providing a resource and means of discussion for those not enrolled with NIH I have started a Yahoo Group for everyone living with TRAPS, their carers, and medical professionals working in this field. I have included a link to the Children's Inn TRAPS discussion board as well as several other useful links.
The TRAPS Support Yahoo Group can be found at:
http://au.groups.yahoo.com/group/TRAPS_support/
Please feel welcome to visit and join this group and please spread the word to others who may find it useful.
Kind regards,
Fran.
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A new TRAPS related resource
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