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Gloriana
dimanche 15 juin 2003 23:32
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I received from a Brazilian family an e-mail mentioning that his baby is affected by the Aicardi-Goutieres syndrome. They would like to know if you know the excistence of children like his in Brazil or Argentina. They would like to be in touch with them just to change experiences.
Their e-mail is malvinaoliver@ig.com.br. Thank you for any help.
Their e-mail is malvinaoliver@ig.com.br. Thank you for any help.
Kim
samedi 12 avril 2003 02:26
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We have a beautiful 10yr. old son, who yesterday we were given the possible diagnoses of AGS. We have further test scheduled to confirm. This is a very confusing and scary syndrome. I would like to know if there are any families in the USA that are dealing with this rare syndrome.
Maria do Carmo Giannini Balekjian
mercredi 19 février 2003 01:31
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I want to know if Icardi Syndrome and Aicardi Syndrome are the same? I heard from a special needs teacher in Brazil that they have at school one student with the Icardi syndrome and they have no information about it and I offered them some help. The reason why I want to help them is that I have a daughter with a different genetic condition ( Angelman syndrome) and I know how though it is having no information. Woul;d you please help me to help them?
I appreciated in advance any effort from you.
Thanks a lot.
I appreciated in advance any effort from you.
Thanks a lot.
Mustafa Özer
vendredi 14 février 2003 18:08
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Dear Sarah!
It is not possible for me to send you an e-mail to your address. Could you please check it again or send me an e-mail to get your correct e-mail address.
With kind regards
It is not possible for me to send you an e-mail to your address. Could you please check it again or send me an e-mail to get your correct e-mail address.
With kind regards
Sarah Rogerson
mercredi 12 février 2003 15:31
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We have recently come across a young mother who,s daughter has been diagnosed with Aicardi-Goutieres and are wondering whether there is a support network within the UK. We are particularly interested in the support services that are available for the carers of these sufferers. We are a Community Mental health service and would be grateful for any information you could supply.
The adress is:
Mayfair Centre for Community Mental Health
63 The Headlands
Kettering
Northamptonshire
NN15 7EU.
We thank you for any information you could supply.
Yours sincerly
Sarah Rogerson
The adress is:
Mayfair Centre for Community Mental Health
63 The Headlands
Kettering
Northamptonshire
NN15 7EU.
We thank you for any information you could supply.
Yours sincerly
Sarah Rogerson
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