Families Around The World
Medical literature describes 13 CHOPS cases. However we know that there are 33 kids around the world, see the map.
One can explain the non-homogeneous distribution (for example many cases in the US and 0 cases in Central and North-Africa) by considering that a genetic disease like CHOPS needs a very specific and expensive diagnostic test, called “exome”.
Moreover, this ultra-rare syndrome has been discovered in recent 2015. We can expect that more cases will be found in the coming years.
All the families indicated in the map are gathered in “CHOPS Syndrome Global”, a support group founded by Lainey Moseley, Leta’s mum, the first patient who received the diagnosis of CHOPS, when she was 18 years old.