Cohen Syndrome is a rare genetic disorder associated with mutations present at COH1 within chromosome 8 and is often undiagnosed for many years. Globally fewer than 1000 cases have been reported.
The Cohen Syndrome Association was founded by parents to raise awareness of this disease with the goal of educating parents and professionals to assure earlier diagnosis and medical interventions.
We have links that you may find useful:
There are several Facebook pages relating to Cohen Syndrome with some closed groups as well.
Cohen Syndrome Association - Web: http://cohen-syndrome.org/
Assoc of Genetic Support – Australia - Web: http://www.connectingup.org/organisation/association-of-genetic-support-of-australasia-inc