Facebook groups

A list of useful Facebooks groups can be found here.


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 Disorder and Aston University to reduce the amount of time it takes research findings to reach parents, carers and professionals – the people who need the information the most.


Sindrome de Kleefstra Brasil – sindromedekleefstra.com

This website has been set up by a Brazilian family who wanted to help provide support for Kleefstra syndrome for families located in Brazil and portugal and for others who speak portuguese as their first language.


Kleefstra syndrome France – kleefstrasyndrome.fr

Kleefstra syndrome France is an association setup to help support families based in France or use French as their primary speaking language.  Based on the outskirts of Besancon with a presence in Bordeaux, Marseille and Paris, they aim to help connect families affected by Kleefstra syndrome and to help families attend conferences and events.

AFSK – associationfrancophonedusyndromedekleefstra.fr

AFSK is an organisation set up by parents in France to help raise awareness of Kleefstra syndrome, provide support to affected families and the participate in medical research.

iDefine – idefine.org

IDefine, based in the US, is committed to identifying life-changing treatments & cures for those with Kleefstra Syndrome and other Intellectual Disabilities.


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.co.uk

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

Contact – contact.org.uk

Contact is a UK-wide charity that supports families with disabled children, bringing them together and helping families take action for others. As well as offering advice and support on all aspects of caring for a disabled child, they run events and workshops that are informative, fun and bring people together.


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.

K.I.D.S. IQ Project – kidsIQproject.org

K.I.D.S. IQ Project 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: 08-02-2022