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.

Kleefstra Syndrome Europe Alliance

Kleefstra Syndrome Europe Alliance– https://kleefstrasyndrome.ijs.si/

The Kleefstra Syndrome Europe Alliance brings together national Kleefstra patient organisations/groups from across Europe, leading the Kleefstra syndrome patient advocacy in Europe and providing contacts to national and regional contact points for families affected by Kleefstra syndrome.

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.


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.


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.



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: 19-09-2022