Links
There are so many sites around that provide information, support and advice for families and individuals affected by chromosome disorders, or for those who are more interested in the medical and scientific aspects.
When we were going through those difficult months searching for and just following Joshua's diagnosis, no-one seemed able to point us to a group of people who would understand what we were going through, or who could shed some light on what it all meant. For what seemed like ages (but was probably only a few weeks or months) it seemed that we would have to try and "get our heads round it" on our own.
Eventually someone told us about
Unique
The Rare Chromosome Disorder Support Group
This group of which we are now members were the first to help us. With over 2400 members, their role is important also as a major umbrella organisation for all rare chromosome disorders.
