Below are additional resources to assist families diagnosed with ID or KS.


Unique is a UK-based charity that provides information and support to families and individuals (and the professionals who work with them) affected by any rare chromosome disorder. Unique welcomes members worldwide and membership is free. Visit Unique’s website

Kleefstra Syndrome General Leaflet

Unique has produced a 24-page leaflet on KS. The PDF document covers a wide range of topics such as what a Chromosome deletion is, the known health issues, development, therapies, sleep and behaviour, as well some answers to questions others may have about KS. View PDF (external website)

Kleefstra Syndrome and Mental Health

Dr. Karlijin Vermeulen, a psychiatrist at the Radboud University Medical Centre in the The Netherlands, and Dr. Miranda Coberman have jointly produced a leaflet describing Kleefstra Syndrome, with a particular focus on mental health. The PDF document is a resource for both families and doctors and includes a discussion on potential drug treatments. View PDF (external website)

Kleefstra Syndrome Phenotype Faces Presentation

This presentation was compiled by Brian Foley with the help of Dr. Tjitske Kleefstra, Dr. Svetlana Yatsenko and Prisca Middlemiss (Information Officer at Unique). View presentation (external website)

KS Discussion Forum

An external KS discussion forum is hosted by Chris and Fiona Heslehurst, founders of the original family support network for KS families. Access forum (external website)