-
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 ... -
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. ... -
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 ... -
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. ... -
Conference 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 ... -
Survey Results 2018
The Kleefstra syndrome parent survey was carried out in June 2018 and was distributed over social media for parents or primary carers of people ... -
Kleefstra syndrome infographic
Here is a fantastic Kleefstra syndrome infographic you can show professionals who are triaging/working with your child – to tell them a bit about ... -
Kleefstra syndrome and mental health
As a parent of a child with Kleefstra syndrome, one of my greatest fears is the future, having read about the syndrome and the ... -
KS Discussion videos by FIND
During the 2015 conference researchers from The Cerebra Centre for Neurodevelopmental Disorders filmed some fantastic videos of families discussing their experiences with Ks. The ... -
Unique Study Weekend 2010
In April 2010 Unique hosted a weekend event for families of children with Ks. The weekend provided a rare opportunity for parents to get ... -
Unique KS Leaflet
Unique updated their leaflet after the 2010 study day held in the UK. Download PDF
Load More
-
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 small charity, and join a committed team ensuring ... -
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 General Meeting in June 2023, our ... -
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 and health in Kleefstra syndrome. Parents ... -
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 be held in Ljubljana, Slovenia, Europe ... -
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 on quality of life for both ... -
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 & language in individuals with Kleefstra Syndrome. ...
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 small charity, and join a committed ...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 General Meeting in June ...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 and health in Kleefstra ...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 be held in Ljubljana, ...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 on quality of life ...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 & language in individuals with ...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 the knot, and had ...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 are many people around ...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 their content. (PRIVATE) Worldwide ...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 11 different countries attending. ...Survey Results 2018
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. ...Kleefstra syndrome infographic
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 ...Kleefstra syndrome and mental health
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. ...KS Discussion videos by FIND
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 ...Unique Study Weekend 2010
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 ...Unique KS Leaflet
Unique updated their leaflet after the 2010 study day held in the UK. Download PDF
