Resources
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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 ... -
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 Download -
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 families from ... -
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 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 ... -
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 ... -
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 ... -
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 ... -
Unique KS Leaflet
Unique updated their leaflet after the 2010 study day held in the UK. Download PDF
