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We are a group of parents, who aim to help other parents and families. We have all walked the rare chromosome path and we are at different stages in our journey. 

With our experience and support we want to help other families who are also riding along this rare chromosome path. 

It can be so lonely when you have a rare chromosome diagnosis and a Doctor tells  you that your child is only 1 of 5 children in the world with that chromosome anomaly.

 No matter what statistics you are given, there will always be someone else who will understand what you are going through. Your family love you and want to help you but sometimes this is a journey that other people can not comprehend. That is why we are here, to try and help you in any way that we can.

Exciting news - Chromosome 6 Research is happening RIGHT NOW - Check this link  Chromosome 6 !!!!!!!!!!!!!!!!! Important: 6q study! (p& dup) The deadline for participation is the end of April. After that date it will be possible to return questionnaires till May 15th.

There is a wonderful organisation in the UK who have been instrumental in getting word out about Rare Chromosome disorders. And we strongly encourage you to register with them. So check out their website and register ith Unique   

”It is critical that we centralise information and contact details of as many affected families as possible. In fact we now have nearly 13,000 affected members registered in 85 countries worldwide, with information collected over the last 28 years! Don't forget – without the Unique database, all the 150+ information guides on specific rare chromosome disorders would not have been possible”