‘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 ...

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 ...

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 ...

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 & ...

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 ...

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 ...

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 ...

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 Download

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 ...

The Kleefstra syndrome parent survey was carried out in June 2018 and was distributed over social media for parents or primary carers of people diagnosed with ...