» Is there any research being carried out on the syndrome?

Research into the genetics of CdLS is ongoing around the world. Such research has led to the discovery of the seven known genes that can change to cause CdLS.

Other research is looking at the different genes and how they affect severity.

Behavioural research, part funded by the CdLS Foundation UK & Ireland has been continuing for many years. As each PhD programme has concluded, so the next linked one begins. All of these have contributed massively to the global treatment guidelines.

Many other facets of CdLS and its symptoms are being investigated globally.