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.
Our organisation wants to make a difference in the lives of those families who deal with Rare Chromosome disorders each day,we want to help you find the services you need. We want to raise awareness in the Community of what Rare Chromosome disorders are and how they can affect our loved ones. We aim to do this by providing online support, local social events and through the education of the community. Having awareness days is a great way to make people take notice of what it is we need, how they can help and the amazing life our children can have when they are supported to reach their potential.
There is very little information for families with children or family members who have a rare chromosome disorder or rare disease, so we want to try to help you find it. There are different groups that can provide information from such as AGSA, CDO , UNIQUE, CDA, ACD and Rare Voices Australia. It is very important to still register you or your child’s information with UNIQUE as they have a world-wide database with the most information. “Unique 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”