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

We are excited to invite you to a KS family’s social gathering. This will be an informal meeting of families to celebrate KS awareness day, the ...

We are excited to invite you to a KS family’s social gathering. This will be an informal meeting of families to celebrate KS awareness day, the ...

Kleefstrasyndrome.org recently contacted Dr Kleefstra and the team at RadboudUMC, Nijmegen for an update on current Kleefstra Syndrome research. We had received a number of questions ...

At the UK conference in August 2018 Dr. Kleefstra indicated that due to being successful in a bid for funding her team would be looking to ...

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 ...

Vermeulen,K; Staal, WG; Bokhoven, H van ; Egger, JMI; Kleefstra,T 2017, Article/Letter to editor (Clinical Neuropharmacology, 40, 4, (2017) pp. 185-188) Doi link to publisher: https://doi.org/10.1097/WNF.0000000000000226 ...