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 ...
‘BEOND’ is a pioneering study with our partners at the Cerebra Network for Neurodevelopmental Disorders, which aims to understand more about behaviour, wellbeing, emotion, ...
Moving towards the uptake and use of Artificial Intelligence (AI) in research and clinical work The Kleefstra Syndrome Scientific Conference 2023, organised by iDefine ...
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 ...
Kleefstra Syndrome recently received its largest ever single donation. John and Mike, a couple who had been living together for many years, finally decided ...
At the Radboudumc in Nijmegen we are constantly collecting data from people with Kleefstra syndrome, in order to learn more about this rare disorder. ...
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. ...
During the 2015 conference researchers from The Cerebra Centre for Neurodevelopmental Disorders filmed some fantastic videos of families discussing their experiences with Ks. The ...
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 small charity, and join a committed team ensuring ...
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 General Meeting in June 2023, our ...
‘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 and health in Kleefstra syndrome. Parents ...
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 be held in Ljubljana, Slovenia, Europe ...
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 on quality of life for both ...
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 & language in individuals with Kleefstra Syndrome. ...
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 small charity, and join a committed ...
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 General Meeting in June ...
‘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 and health in Kleefstra ...
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 be held in Ljubljana, ...
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 on quality of life ...
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 & language in individuals with ...
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 the knot, and had ...
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 are many people around ...
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 their content. (PRIVATE) Worldwide ...
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 11 different countries attending. ...
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 Kleefstra syndrome to complete. ...
Here is a fantastic Kleefstra syndrome infographic you can show professionals who are triaging/working with your child – to tell them a bit about KS and what to look out ...
As a parent of a child with Kleefstra syndrome, one of my greatest fears is the future, having read about the syndrome and the psychiatric issues that may accompany it. ...
During the 2015 conference researchers from The Cerebra Centre for Neurodevelopmental Disorders filmed some fantastic videos of families discussing their experiences with Ks. The videos included important topics such as ...
In April 2010 Unique hosted a weekend event for families of children with Ks. The weekend provided a rare opportunity for parents to get together, to learn from the medical ...