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 ...

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 ...

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 ...

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 ...

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 ...

Unique updated their leaflet after the 2010 study day held in the UK. Download PDF