help

8 replies

ettevy80 · 25/10/2011 23:48

my child was diagnosed with a rare genetic chromezone disorder called ring 21. i have yet to find anyone who can help or talk2

OP posts:

FanjoForTheMuahahammaries · 26/10/2011 00:01

www.rarechromo.org/html/home.asp

madwomanintheattic · 26/10/2011 00:03

try unique

they have lots of info on chromosome deletions etc, and seem to have a pamphlet.

googling 'chromosome ring 21' gave lots of hits.

i think unique are quite good with families as well.

FanjoForTheMuahahammaries · 26/10/2011 00:03

www.rarechromo.org/forum/LeafletConfirm.asp?ch=Chromosome%2021&fn=Ring%2021%20FTNW.pdf

madwomanintheattic · 26/10/2011 00:03

lol fanjo, i think that was the same hit.

FanjoForTheMuahahammaries · 26/10/2011 00:04

Snap! Unique also have a facebook chat group

FanjoForTheMuahahammaries · 26/10/2011 00:08

here

2011RWC · 26/10/2011 00:09

You can 'like' the main Unique FB page but you have to actually join/register with Unique to be allowed to join their closed FB group. Joining is free and they will put you in touch with any families they have on their database with the same condition and also with other families in your area with rare chromosome disorders.

Original poster

ettevy80 · 26/10/2011 19:18

thank you i have registered with the group so fingers crossed i get somewhere

OP posts:

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