CDO-Chromosome Disorder Outreach

ToastieSimons · August 2012

Anyone use this to find others with the same diagnosis?

https://www.chromodisorder.org/CDO/Default.aspx

Assembly_Reqd · August 2012

I am a member there as well as Unique out of the UK.

Unique: I got a list of parents, but they were more in Europe and I didn't pursue that list. Unique also has great disorder leaflets (Information tab then Disorder leaflets) on their website (www.rarechromo.org) Their leaflets are also written through the standpoint of "one child with this deletion has x and this seems to be shared among others as well." So they use their database of children to write their info. You will get a packet and have some stuff to fill out from them.

CDO: Is pretty awesome too. I was able to connect up with a mom whose daughter sort of shares one of Nate's deletions and I got a list of 4 or 5 other parents. All of their stuff is on the website including a database section where you can keep track of all issues affecting your child. You can even enter more than one child. They also have a therapies tab and a milestones tab. I use CDO to keep track of all Nate's different dx's and I just updated it yesterday. It is also a great way to get a snapshot or printout if you need to bring it along for a doctors appointment.

The thing about connecting up with other parents of children with your same diagnosis is that their child may be affected in a completley different way than yours, so you have to be prepared for that. Also, Nate is truly unique with three seperate interstitial deletions, so there is nobody in the databases like him. I have had positive experiences with both groups. Have fun!

ToastieSimons · August 2012

Assembly_Reqd:
I am a member there as well as Unique out of the UK.

Unique: I got a list of parents, but they were more in Europe and I didn't pursue that list. Unique also has great disorder leaflets (Information tab then Disorder leaflets) on their website (www.rarechromo.org) Their leaflets are also written through the standpoint of "one child with this deletion has x and this seems to be shared among others as well." So they use their database of children to write their info. You will get a packet and have some stuff to fill out from them.

CDO: Is pretty awesome too. I was able to connect up with a mom whose daughter sort of shares one of Nate's deletions and I got a list of 4 or 5 other parents. All of their stuff is on the website including a database section where you can keep track of all issues affecting your child. You can even enter more than one child. They also have a therapies tab and a milestones tab. I use CDO to keep track of all Nate's different dx's and I just updated it yesterday. It is also a great way to get a snapshot or printout if you need to bring it along for a doctors appointment.

The thing about connecting up with other parents of children with your same diagnosis is that their child may be affected in a completley different way than yours, so you have to be prepared for that. Also, Nate is truly unique with three seperate interstitial deletions, so there is nobody in the databases like him. I have had positive experiences with both groups. Have fun!

this I understand. both of my boys have the same diagnosis but DS1 has microcephaly, DS2 does not. DS1 had a poor suck/swallow DS2 did not. DS2's hypertonia and reflux is nowhere near as severe as DS1.

realisticdreams · August 2012

I haven't been on Madisons foundation in a while but I just wanted to throw that out there incase it might have someone you could link up with.

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CDO-Chromosome Disorder Outreach

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