News and Resources
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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 ...
