News and Resources
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 our Annual ...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, cognition, sleep ...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 Europe, will ...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 significant impact ...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 speech & ...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 to tie ...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. Since there ...Facebook Groups
Please find a list of known Facebook groups below. None of these groups were created nor managed by Kleefstrasyndrome.org and we cannot be held responsible for ...Top 10 tips for RARE Healthcare Providers
This useful infographic was co-created by the founders of RARE Revolution magazine Please feel free to download, print and circulate to your healthcare providers. PDF DownloadConference 2018
On the weekend of 10th-12th August 2018 we held our third family conference and social gathering. The weekend was a huge success with 42 families from ...
