Kleefstra syndrome

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Kleefstra syndrome

  • About Kleefstra Syndrome
    • What is Kleefstra syndrome?
    • Living with Kleefstra syndrome
    • Facial Phenotypes
    • Kleefstra syndrome and KMT2C
    • About Dr. Kleefstra
  • Support
    • Call-back Service
    • Published KS Research & Studies
    • Resources
    • GENIDA Digital Registry
    • Useful Links
  • Awareness
    • Awareness Day
    • Downloads
  • Events
    • Future Events
    • Past Events
  • Sign Up
  • About Us
    • Meet the Team
    • Mission Statement
    • Support Us
    • Easyfundraising
    • Partners
    • Contact Us
    • Our Policies

Resources

Home›Category: "Resources"
  • Resources
    By mousem
    19th January 2020
    0
    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
  • Resources
    By mousem
    19th January 2020
    0
    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
  • Past EventsResources
    By mousem
    28th August 2018
    2656
    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
  • Resources
    By mousem
    11th August 2018
    1705
    0

    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 ...
    Read More
  • Resources
    By mousem
    3rd March 2018
    3578
    0

    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 ...
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  • Dr. Miranda Coberman
    Published KS Research & StudiesResources
    By mousem
    8th January 2017
    1794
    0

    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 ...
    Read More
  • FIND - Further Inform Neurogenetic Disorders
    Resources
    By mousem
    19th January 2016
    0
    0

    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 ...
    Read More
  • Unique Study Weekend 2010
    Published KS Research & StudiesResources
    By mousem
    20th July 2010
    492
    0

    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 ...
    Read More
  • Kleefstra Syndrome Unique Leaflet 2010
    Published KS Research & StudiesResources
    By mousem
    27th April 2010
    1233
    0

    Unique KS Leaflet

    Unique updated their leaflet after the 2010 study day held in the UK. Download PDF  
    Read More

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