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Kleefstra syndrome

  • About Kleefstra Syndrome
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Support

Home›Front Page›Category: "Support" (Page 5)
  • Active Research & StudiesNews and Resources

    Take Part Now – Radboud University Medical Center Kleefstra Syndrome Survey

    By mousem
    16th July 2021
    At the Radboudumc in Nijmegen we are constantly collecting data from people with Kleefstra syndrome, in order to learn more about this rare disorder. ...
    Read More
  • PubMed
    KS Research & Studies

    PubMed – List of published KS research

    By mousem
    24th January 2020
    PubMed comprises more than 26 million citations for biomedical literature from MEDLINE, life science journals, and online books.  This is a regularly updated list ...
    Read More
  • News and Resources

    Facebook Groups

    By mousem
    19th January 2020
    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 ...
    Read More
  • News and Resources

    Top 10 tips for RARE Healthcare Providers

    By mousem
    19th January 2020
    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. ...
    Read More
  • All Events

    Beaulieu – 14th Sept 2019

    By mousem
    7th July 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 ...
    Read More
  • All Events

    Eureka! – 14th Sept 2019

    By mousem
    3rd June 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 ...
    Read More
  • KS Research & Studies

    Research update from Radboud UMC

    By mousem
    23rd April 2019
    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 ...
    Read More
  • KS Research & Studies

    Introducing new KS researcher

    By mousem
    6th January 2019
    At the UK conference in August 2018 Dr. Kleefstra indicated that due to being successful in a bid for funding her team would be ...
    Read More
  • All EventsNews and ResourcesUK Conferences

    Conference 2018

    By mousem
    28th August 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 ...
    Read More
  • News and Resources

    Survey Results 2018

    By mousem
    11th August 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 ...
    Read More
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