FIND – findresources.co.uk

This website summarises findings from high quality research studies into genetic syndromes and have added Ks to their list. Created by the Cerebra Centre for Neurodevelopmental Disorders to reduce the amount of time it takes research findings to reach parents, carers and professionals – the people who need the information the most.


PubMed Ks Resources – ncbi.nlm.nih.gov

PubMed comprises more than 26 million citations for biomedical literature from MEDLINE, life science journals, and online books.  This is a regularly updated list of Ks related materials that may be of interest to families or professionals.

Unique – rarechromo.org

Unique’s mission is to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder and to raise public awareness.


Chromosome Disorder Outreach – chromodisorder.org

Chromosome Disorder Outreach Inc. is a non-profit organization which was founded in 1992 by a group of seven parents raising children born with rare chromosome disorders.  The site aims to provide support and information to anyone diagnosed with a rare chromosome change, rearrangement or disorder.


GeneSpark – genespark.org

GeneSpark.org is an international non-profit foundation focused on the advancement of drug treatments for reversible Intellectual Disability (ID) disorders initially focused on Ks.


Journal of Medical Genetics – jmg.bmj.com

Journal of Medical Genetics is a leading international peer-reviewed journal covering original research in human genetics, including reviews of and opinion on the latest developments.

Page updated: 24-05-2017