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cranial facial rare illness support network needed

(8 Posts)

My beautiful Nephew was born 4 weeks ago with Aperts Syndrome. He is gorgeous!! My sister and BIL have met with lots of people from the special unit in the hospital, but I told her I would try and find some support net work for her, so she could speak to some parents that have been through it or are going through it, for a chat, or a hand hold -

I cant find any, not in the uk?

bump

LightShinesInTheDarkness Wed 16-Sep-09 20:31:56

http://www.ccakids.com/ but its based in Dallas, Texas. Here is what appears to be the largest UK charity/support group - http://www.headlines.org.uk/

Good luck.

sausagerolemodel Wed 16-Sep-09 20:37:32

try here?

www.changingfaces.org.uk/Home

thank you, hadnt even thought of changing faces

cyteen Wed 16-Sep-09 20:55:00

Maybe try Contact A Family?

etlou Mon 28-Sep-09 20:06:11

Try Facebook - my son has Aperts and there are loads of people on there - Aperts Syndrome Awareness with Aperts or with children / realtives with Aperts from all round the worls - I've found it great to talk to people and found it really helped with everything.

NKffffffff9d5230eaX119e410910c Mon 05-Oct-09 22:45:49

http://www.headlines.org.uk/

Great UK charity

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