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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. ...PubMed – List of published KS research
PubMed comprises more than 26 million citations for biomedical literature from MEDLINE, life science journals, and online books. This is a regularly updated list ...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. ...Beaulieu – 14th Sept 2019
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 ...Eureka! – 14th Sept 2019
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 ...Research update from Radboud UMC
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 ...Introducing new KS researcher
At the UK conference in August 2018 Dr. Kleefstra indicated that due to being successful in a bid for funding her team would be ...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 ...