Parents of disabled children-Special needs forum support group

Hello everyone

My name is Marion and a friend told me about this website, it looks good!

I am mum to Rob who has a rare chromosome disorder, he is now 15.5 years old and has severe learnng difficulties, epilepsy, no speech, etc, etc

I work as family support officer for Unique, the rare chromosome disorder support group.
We have over 6800 members worldwide, so if you or anyone you know has a child that has a rare chromosome disorder and would like to find out more about Unique's services, please visit http://www.rarechromo.org

I have also just recently made a video , which is on youtube, please feel free to take a look. http://www.youtube.com/watch?v=y5QDBJY3xVU

Thanks

Hi, out of interest (i might be being daft) but is a chromosome disorder different to a genetic disorder? our son has a rare genetic disorder!
Welcome to the forum
Lucy xx

I saw your organisation in a story in a local paper yesterday.
The story was related to a chromosome deletion disorder and apparently their are only 214 people world word with this sort of deletion.
I beleive it was chromosome 9?

(11-02-2009 09:55 AM)MazzyM Wrote: [ -> ]Hello everyone

My name is Marion and a friend told me about this website, it looks good!

I am mum to Rob who has a rare chromosome disorder, he is now 15.5 years old and has severe learnng difficulties, epilepsy, no speech, etc, etc

I work as family support officer for Unique, the rare chromosome disorder support group.
We have over 6800 members worldwide, so if you or anyone you know has a child that has a rare chromosome disorder and would like to find out more about Unique's services, please visit http://www.rarechromo.org

I have also just recently made a video , which is on youtube, please feel free to take a look. http://www.youtube.com/watch?v=y5QDBJY3xVU

Thanks

Hiya Myself and my 2 boys have a 9q34.3 deletion syndrome and we are part of the unique and we have found them to be very helpful and we are all going on there study day in april to meet other families.