Inversion Deletion Duplication of Chromosome 8p - Project 8p Rare Disease Day

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  • Опубліковано 26 лют 2019
  • This rare condition affects an estimated 80 people worldwide. It's called Inversion Deletion Duplication of Chromosome 8p. Our "8p heroes" are participating in vital genetic research to further knowledge of this chromosomal disorder and helping teach others what it means to "Live and Love Rare." You can get involved with Project 8p at our our website, or follow us on Twitter, Instagram and Facebook.

КОМЕНТАРІ • 20

  • @aimeehanson1909
    @aimeehanson1909 10 місяців тому

    Hi there! We are a 8P household ❤

  • @selfiephotobooth
    @selfiephotobooth 2 роки тому +2

    My daughter has an 8p duplication and a 4q deletion and I can confirm she is incredibly cute!!

    • @user-yf6rx2bg1v
      @user-yf6rx2bg1v 3 місяці тому

      How is your child doing now? A child suffering from the same disease

  • @sigridgral6766
    @sigridgral6766 3 місяці тому

    Greetings from Germany ❤

  • @jeanieshank1433
    @jeanieshank1433 5 років тому +4

    Blessings! We are not an 8p family but we are a rare family. All three of us have disabilities and both my kids have one or more rare disabilities including achalasia, DI and giant cell granuloma

  • @brooklynfoodz
    @brooklynfoodz 5 років тому +4

    @ 2:07 oh my god, SO SO SO cute

  • @danielletaylor9428
    @danielletaylor9428 3 роки тому +1

    My child has just been diagnosed with 8p
    And I just want to learn but I can't find much and with this covid going on we can't see doctors about it yet witch makes it harder

  • @binashah4353
    @binashah4353 5 років тому +2

    This is truly what a united 8p community should be about! Happy to be a part of this!

    • @DataJYdocs
      @DataJYdocs 4 роки тому

      Blessed is the dedication of you people!

  • @juliananogueira7484
    @juliananogueira7484 Рік тому

    Meu nasceu com a 8p23, tem seis meses de idade e precisa fazer uma cirurgia no coração pra fechar uma CIV, e onde moro não fazem a cirurgia, e os hospitais de fora dos outros estados brasileiro não aceitam ele, por causa da síndrome, estou arrasada não tenho condições de pagar a cirurgia particular.

    • @sigridgral6766
      @sigridgral6766 3 місяці тому

      Es tut mir so leid, von eurer Geschichte zu lesen! Wie geht es euch heute?

    • @user-yf6rx2bg1v
      @user-yf6rx2bg1v 3 місяці тому

      Does your son suffer from the same disease? I started searching and wanted a family who had a child with the same disease as my son to inquire about
      ​@@sigridgral6766

  • @lisagroeger1978
    @lisagroeger1978 3 роки тому

    I have a rare genetic condition called phenylkenouria pku forbshort it affects 1 in 15000 babies world wide. If babies dont get on a special medical diet at birth they can have physical and mental imparments for life.

  • @bigmamadrama99
    @bigmamadrama99 5 років тому +1

    Love our 8p family

  • @ChrisandTyCox
    @ChrisandTyCox 3 роки тому

    I lost my twins with trisomy 8

  • @colettearnold89
    @colettearnold89 2 роки тому

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