Support
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Vacant position – IT/web manager
Join our team of volunteers We are currently seeking an IT/web manager to join our Board of Trustees to manage the website for our ... -
Kleefstra Syndrome UK unveils new identity in line with new charity status
Our charity has outgrown its unincorporated charitable status and now requires transformation into an Incorporated Charitable Organisation registered with the UK’s Charity Commission. During ... -
Behavioural and Emotional Outcomes in Neurodevelopmental Disorders (BEOND) and Kleefstra Syndrome – Take Part Now!
‘BEOND’ is a pioneering study with our partners at the Cerebra Network for Neurodevelopmental Disorders, which aims to understand more about behaviour, wellbeing, emotion, ... -
Kleefstra Syndrome Scientific Conference 2023
Moving towards the uptake and use of Artificial Intelligence (AI) in research and clinical work The Kleefstra Syndrome Scientific Conference 2023, organised by iDefine ... -
Sleep study on Kleefstra Syndrome
Little is known about sleep patterns observed in individuals with Kleefstra syndrome, but we know from listening to the community that sleep has a ... -
Speech and Language study
Research into speech and language skills in individuals with Kleefstra syndrome: an international study Murdoch Children’s Research Institute are running a project looking at ... -
Congratulations and thank you to John and Mike for their extremely generous donation!
Kleefstra Syndrome recently received its largest ever single donation. John and Mike, a couple who had been living together for many years, finally decided ... -
The Impact of Rare Genetic Disorders on Family Functioning
Karlijn Vermeulen (Pediatric psychiatrist and clinical researcher at Radboud UMC in Nijmegen) recently published an article about the enhanced levels of stress that parents ... -
Take Part Now – Radboud University Medical Center Kleefstra Syndrome Survey
At the Radboudumc in Nijmegen we are constantly collecting data from people with Kleefstra syndrome, in order to learn more about this rare disorder. ... -
PubMed – List of published KS research
PubMed comprises more than 26 million citations for biomedical literature from MEDLINE, life science journals, and online books. This is a regularly updated list ...
