CDG community

Meet, discuss & support other patients or families living with CDG. Participate in group discussions. Contribute to topics, or just share what's on your mind

CDG community news

  • -

    Finding the cause of Liam’s metabolic disease
    News, published 18 days ago

    show transcript


    In the study, researchers at Emory University School of Medicine and Sanford-Burnham used whole-exome sequencing to find the mutations causing a glycosylation disorder affecting Liam, a boy born in 2004.

  • -

    Todavía hay muchos horizontes por conquistar en los DCG (ES)
    News, published 28 days ago

    show transcript


    Los principales retos son continuar describiendo fenotipos y desarrollar un modelo animal que permita investigar en posibles tratamientos.

  • -

    Clinicaltrials.gov
    News, published about 1 month ago

    show transcript


    No current trials for CDG here but check back for future trials.

  • -

    CDG Fairytale
    News, published about 1 month ago

    show transcript


    Available in 4 languages

  • -

    Severe congenital disorder successfully treated in a mouse model for the first time
    News, published about 1 month ago

    show transcript


    Using a mouse model, Heidelberg University Hospital researchers have for the first time successfully treated a severe congenital disorder in which sugar metabolism is disturbed.

  • -

    Entrevista de radio del Presidente de la asociación portuguesa de CDG (ES)
    News, published about 1 month ago

    show transcript


    Doenças raras

    Convidado: Vanessa dos Reis, Associação Portuguesa CDG e outras Doenças Metabólicas Raras

  • -

    EuroGEN Test
    News, published 5 months ago

    show transcript


    EuroGentest2 is a Coordination Action funded by the 7th Framework of the European Commission. The project is organised in 3 Units looking at all aspects of genetic testing.

  • -

    Guia Metabólica
    News, published 5 months ago

    show transcript


    En el momento actual, nuestra unidad esta compuesta por más de 15 especialistas en diferentes áreas de la neuropediatría, gastroenterología y nutrición, psicología, farmacia y bioquímica, que cuentan además con el apoyo de otras especialidades pediátricas...

  • -

    CDG Registry
    News, published 6 months ago

    show transcript


    EUROGLYCANET:a European network that aimed on the advancement of research, diagnosis and treatment of CDG, was created in 1999 and has been supported by the European Commission since 2000.

     

    The advantage of a network like  EUROGLYCANET is the close interaction between expert clinicians and specialised researchers. In addition, contributed to create a patient registry that will enormously contribute to: 

    1.  advance on CDG  knowledge: by boosting epidemiological, clinical or social research

    2.  Identify and monitore the care of patients

    3. To potentiate collaborations directed to possible treatments

  • -

    Nijmegen Center for Disorders of Glycosylation
    News, published 6 months ago

    show transcript


    This website from the Nijmegen Center for Disorders of Glycosylation (NCDG) has been established to provide information on congenital disorders of glycosylation (CDG) for patients with CDG, parents, professionals and people otherwise interested in CDG. Behind the scenes of this website, a team of clinically involved people and researchers at the Radboud University Nijmegen Medical Center daily focuses on early diagnosis and treatment of patients with CDG and find ways to improve their quality of life.