Question - Russell Silver Syndrome

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Asked 6 years ago Sassy kitten 93 2242

Hello I'm new here and have been searching for support with RSS I have never met anyone that has it and I've been very alone with this all my life 

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1

Hello! There is a Facebook page for RSS.  :) it's awesome support. I'm a parent of a child with RSS.  I know as a parent we love when an adult living with RSS joins the group! 

Answered 6 years ago Pixiebaby 11
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I don't go on Facebook much but I have seen the one for magic but not much for older adults when it comes to RSS but thank you

 

Magic doesn't have many posting 

Answered 6 years ago Sassy kitten 93 2242
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Hi, I am an adult with RSS. The group on Facebook is called TARSS teens and adults with Russell silver syndrome. There is also just a female group (not sure if there is a male only group) it's called Russell silver syndrome in women. I highly suggest you joining these! You can talk to so many people it's amazing support!! :) 

Answered 6 years ago TinyA 11
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Hi!  I work with MAGIC in the RSS division and would be happy to help!   www.magicfoundation.org    or email me at [email protected].    The TARSS group on FB is great for RSS adults!    The Day in a Life with RSS/SGA families is a great private page as well!

 

Answered 6 years ago Alyssa 11
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Thank you I am very greatful for all your answers I will try and check it out

Answered 6 years ago Sassy kitten 93 2242
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I have asked to join TARSS under Sandi christenson but I can't use messaging sorry

Answered 6 years ago Sassy kitten 93 2242
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Hi Sassy, Have you heard of the Child Growth Foundation they can be found http://www.childgrowthfoundation.org/ they are really great, very supportive, full of information. Check them out

Answered 6 years ago Georgie 210
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hi

join the facebook group:

A day in the life-russell silver syndrome & sga families

 

Answered 6 years ago Liraz 10
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Wow I really didn't know there was so much out there thank you all so much

Answered 6 years ago Sassy kitten 93 2242
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