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Kleefstra syndrome

  • About Kleefstra Syndrome
    • What is Kleefstra syndrome?
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News and Resources

Home›Front Page›Support›Category: "News and Resources" (Page 2)
  • Kleefstra Syndrome UK Logo
    News and Resources
    By mousem
    14th November 2023
    883
    0

    Kleefstra Syndrome UK unveils new identity in line with new charity status

    Our charity has outgrown its unincorporated charitable status and now requires transformation into an Incorporated Charitable Organisation registered with the UK’s Charity Commission. During our Annual ...
    Read More
  • BEOND
    KS Research & StudiesNews and Resources
    By mousem
    29th May 2023
    1109
    0

    Behavioural and Emotional Outcomes in Neurodevelopmental Disorders (BEOND) and Kleefstra Syndrome – Take Part Now!

    ‘BEOND’ is a pioneering study with our partners at the Cerebra Network for Neurodevelopmental Disorders, which aims to understand more about behaviour, wellbeing, emotion, cognition, sleep ...
    Read More
  • Kleefstra syndrome scientific conference
    News and Resources
    By mousem
    26th May 2023
    879
    0

    Kleefstra Syndrome Scientific Conference 2023

    Moving towards the uptake and use of Artificial Intelligence (AI) in research and clinical work The Kleefstra Syndrome Scientific Conference 2023, organised by iDefine Europe, will ...
    Read More
  • KS Sleep Study
    Active Research & StudiesNews and Resources
    By mousem
    29th December 2022
    1130
    0

    Sleep study on Kleefstra Syndrome

    Little is known about sleep patterns observed in individuals with Kleefstra syndrome, but we know from listening to the community that sleep has a significant impact ...
    Read More
  • Murdoch Children's Research Institute - Speech Research
    KS Research & StudiesNews and Resources
    By mousem
    12th October 2022
    2160
    0

    Speech and Language study

    Research into speech and language skills in individuals with Kleefstra syndrome: an international study Murdoch Children’s Research Institute are running a project looking at speech & ...
    Read More
  • The family with Carrie
    News and Resources
    By mousem
    8th July 2022
    1509
    0

    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 to tie ...
    Read More
  • Active Research & StudiesNews and Resources
    By mousem
    16th July 2021
    2355
    0

    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. Since there ...
    Read More
  • News and Resources
    By mousem
    19th January 2020
    2078
    0

    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 ...
    Read More
  • News and Resources
    By mousem
    19th January 2020
    1352
    0

    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
    Read More
  • All EventsNews and ResourcesUK Conferences
    By mousem
    28th August 2018
    5197
    0

    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 ...
    Read More
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