All Congenital Disorders of Glycosylation Patient Groups

Here's a selection of information from patients & professionals to better understand Congenital Disorders of Glycosylation.

  • Portuguese CDG Association

    The Portuguese Association for CDG and other Rare Metabolic Diseases (APCDG-DMR) vision is developed from the belief of its founder that to achieve the hopes of patients and families who suffer from rare diseases, key stakeholders need:

    To include patients and their representatives as full partners during the overall research and clinical program;
    To be patient-centric in their thinking.

    This is a very promising and innovative approach whereby all parties combine their strength and expertise in a collaborative, dynamic and shared spirit. That is the key driver to achieving transformative, potentially life-saving therapies that can revolutionize the clinical treatment of a disease and offer new life to patients and concerned families.

    Contact Portuguese CDG Association
  • CDG CARE

    CDG CARE (Community Alliance and Resource Exchange) is a nonprofit organization founded by parents seeking information and support for a group of disorders known as Congenital Disorders of Glycosylation (CDG)

    Contact CDG CARE
  • Spanish CDG Assoc.

    Asociación Española del Síndrome CDG (AESCDG)
    This is a non-profit association of parents and families affected with CDG, with the aim of provide appropriate information about this syndrome and defend the interests of this community.

    http://www.facebook.com/group.php?gid=4728... Contact Spanish CDG Assoc.

  • Foundation Glycosylation

    Foundation Glycosylation (the FoG) was established in the Atlantic Canadian province of New Brunswick. The non-profit foundation supports research for the development of therapies targeting CDG, aims to raise awareness of the disorder and strives to advocate for individuals living with this enzyme deficiency. The FoG was established by the family of a young girl living with CDG-1L (ALG9-CDG) with the support of the Saint John Regional Hospital Foundation and is currently supporting the collaborative research of scientists at the University of New Brunswick, Dalhousie University and the Saint John Regional Hospital.

    Contact Foundation Glycosylation
  • Glycokids Germany

    An important task of the Federal Association CDG Syndrome Association is concerned families about these metabolic disease and to inform each other to get in touch. Every year this takes place a pan-European family meetings to promote exchanges between families across countries. In addition, the Federal Association request an information brochure for affected families and doctors have released to compact to inform about the current state of knowledge of the different types of CDG syndrome.

    Contact Glycokids Germany
  • P'tits CDG France

    Les "P'tits CDG" est une association de parents oeuvrant pour et avec les familles touchées par le CDG Syndrome. Sa vocation est multiple :

    - Elle permet aux familles concernées de se rencontrer, de partager leur expérience, d'avoir une écoute attentive et bienveillante,

    - Elle organise des événements pour ces familles et leurs enfants,

    - Elle relaie les autres initiatives : autour du CDG Syndrome spécifiquement, ou autour des atteintes cérébelleuses plus généralement,

    L'objectif est de nous positionner en complément du tissu associatif déjà existant autour de ce type de handicap afin d'y apporter une dimension humaine basée sur les rencontres et les échanges entre familles concernées par la maladie.

    D'autre part, notre champ d'action ne se limite pas au territoire français et vise à capitaliser sur toutes les initiatives prises par les associations-amies à l'étranger (Espagne, Portugal, USA, Allemagne,...). Des partenariats, des échanges et des événements sont également organisés avec ces relais.

    Enfin, sans focaliser son action sur la recherche, "Les P'tits CDG" cherche à établir une relation bilatérale avec le monde médical : se faire le relais d'avancées ou d'informations médicales pertinentes et promouvoir son action après des professionnels au contact des familles.

    Contact P'tits CDG France
  • CDG UK

    CDG UK patient representative:
    Tim Jardine
    />mothjardine@yahoo.co.uk

    Contact CDG UK
  • CDG Brazil

    My name is Adriana Maciel. I am the Brazilian CDG patient Representative. I hope that many other families will contact us and share information and experiences with us. My e-mail address is the following: adriana.t.maciel@gmail.com

    O meu nome é Adriana Maciel. Eu sou a representante de pacientes CDG no Brasil. Eu espero que muitas outras famílias entrem em contato conosco e partilhem informações e experiências. O meu e e-mail é o seguinte: adriana.t.maciel @gmail.com

    Contact CDG Brazil