cranial facial rare illness support network needed

[OnlyWantsOneDoesntLikeDM]

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

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

Good luck.

try here?

www.changingfaces.org.uk/Home

thank you, hadnt even thought of changing faces

Maybe try Contact A Family?

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.

www.headlines.org.uk/

Great UK charity