UNDER CONSTRUCTION
If you would like to be reminded when the register goes online please register your interest here!
Your names will not be public, only the disease, syndrome or disorder. It is my hope that I can connect families with the same concerns - of course with your permission first!
The other thing that Ive learned is that even though disorders and conditions differ people affected become expert at finding information - this is a skill that can be valuable to new families!
If... we are lucky enough to get a body that can support rare diseases, syndromes & disorders then with your permission we can provide them with an instant client list :-)