To inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder and to raise public awareness.
Informace
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Unique eventsAktualizováno asi před 9 měsíci
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- Expectations - Manchester
Contact Theatre
13. říjen v 19:30 - EXPECTATIONS
Teater Trixter, Goteborg, Sweden an...
15. duben v 0:00 - Valentine's day
All around the world
9. únor v 21:45
Ali DiMaggio Congratulations Nicola!! On the birth of your very special girl Gemma!!
Tash Smith hi have a beautiful 6 month old daughter with chromosome 18 q deletion syndrome is there anyone else with a child with same
Sharyn Hello everyone! Does anyone have any experience with Chromosome 7 deletion and mosaicism? Our 6 month old girl was diagnosed 2 days before she was born.
Nicola Burr My husband has opened a group on here to help keep our family and friends updated on Gemma's progress as we needed a quicker way of doing this.. Hopefully one day our story may help give others hope like you guys within Unique gave us!.. there are also a few pics and a short video of her on there if anyone wanted a peek :) x
Because our little girl is special, and we've had quite a complicated journey already leading up to her Birth, we thought we'd create a FB group for her to give a few details of what we've been going ...
Astrid just when you think you are coping with everything just fine & wouldn't change a single thing, somebody (who knows the situation) comes along and remarks just how much my little girl doesn't really look like our other kids. Ups & downs, so glad Unique is here.
Kerry Gray Hi. My daughters got a bit missin on chromosome 20. I Wud luv 2 hear frm any1 else who have the same missin.
Maz Attention all Welsh families
Disabled Children Matter Wales Campaign is a campaign to push the Welsh Assembly Government to Make the lives of disabled children and young people better. They are asking the government to put in pla...
Maz multi sensory impairment and communication study day in London next year
Zdroj: www.communicationmatters.org.uk
Madeline Mccraieg hi does any1 know about wheter you are entitled to extra benefits if you have a child with a rare chromosome disorder? any info would be greatly appreciated
Philippa Cripps Thanks for the information pack which l received today for my daughter Amy Cripps
Maz A link for our dads..........
Zdroj: www.dadtalk.co.uk
Having a disabled child affects all members of a family. Mothers and fathers can react in different ways to the news that their child has a disability or medical condition.
Maz If any of you are experiencing sleep issues with your children, you may be interested in attending this free event in Oxford next week. Please contact Cerebra for more information (see link below).
Zdroj: www.rarechromo.org
Vicki Lynn Primrose Purdy
Hi all! Just wondering if anyone shares a like experience....Hayes del 6(p) 25.1, and dup 7(q)21.13 .....27mo...Has started having FEARS of so many different things...the bumper pads in his crib, flies, noises, trains, people, places, on and on and on...I am just wondering if anyone else has noticed new and sudden fear...s ...all in things that didn't bother him at all in the past! I feel so sorry for him. His tears are huge, and his fears and tears are keeping him awake at night! Thanks for any and all input!! :)více
Unique - Rare Chromosome Disorder Support Group New reports published after studies on boys with XYY and girls with XXX (Triple X). Please visit the Unique website (www.rarechromo.org) for details.
Zdroj: www.rarechromo.org
Unique - Rare Chromosome Disorder Support Group for families affected by any rare chromosome disorder such as deletions, duplications, translocations, trisomy, monosomy, rings, mosaic, inversion, isodicentric, microdeletions, tetrasomy, monosomy, congenital, inherited
Nedávná činnost
Unique - Rare Chromosome Disorder Support Group diskutoval o Chromosome 5p na diskuzním fóru u Unique - Rare Chromosome Disorder Support Group.
