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Included in Orphanet Database of Rare Diseases

Included in Orphanet Database of Rare Diseases

by dennisjansen | Oct 14, 2020 | News EN

Chung-Jansen syndrome has been included in the database of rare diseases on the website of www.orphanet.nl...

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  • Family video meeting with Dr. Chung (for parents/caregivers and adults with the syndrome)
  • Diana about her daughter Natalya
  • Christy about her daughter Eleonor
  • Jordan about himself
  • Sandra About Her Son Joshua

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    Chung-Jansen Syndrome

    About PHIP

    Syndrome in Short
    Appearance
    Psychological Development and Behaviour
    Learning
    Physical Problems
    Inheritance

    Therapy

    Social Emotional Development
    Cognitive Development
    Motor Development
    Stimulus Processing

    Stories

    Diana about her daughter Natalya

    Natalya Rose was born on April 10, 2009 . We got the diagnosis of PHIP related disorder / Chung-Jansen syndrome just a few years ago. Natalya has struggled her whole life having different kinds of psychological and physical problems.

    Christy about her daughter Eleonor

    Christy Leiter talks and writes about her daughter Eleonor who has Chung-Jansen syndrome on her instagram account and youtube channel

    Jordan about himself

    Jordan Smelley has Chung-Jansen syndroom and uses his life experiences to help others as a peer support.

    Sandra About Her Son Joshua

    Joshua is 14 years old now and has been diagnosed with Chung-Jansen syndrome. He is adopted and we are in very close contact with his biological parents. Joshua’s mother also has the same syndrome.

    h

    lovewhatmatters.com

    h

    sparkforautism.org

    h

    davidsusman.com

    Links

    h

    omin.org

    h

    orpha.net

    h

    rarechromo.org

    YouTube

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    PHIP Family Meeting 2022

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    PHIP Family Meeting 2018

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    Living With Chung-Jansen Syndrome

    Contact

    

    info@chungjansensyndrome.eu

    

    Joyce Sonneveld

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