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Congenital Disorders of Glycosylation (CDG), formerly called carbohydrate-deficient glycoprotein syndrome, are a group of very rare inherited metabolic disorders that affect a process called glycosylation.

Eline's Story

Written by Noëlle, published 4 months ago.

Experience of living with CDG in the Netherlands.

Written by Noëlle, published 4 months ago.

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CDG Recent Activity

Conference Registration Chicago 2012
topic, published 3 days ago
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The CDG Family Network Conference will be held from June 22-24, 2012, in Chicago.
Here is the registration form, details on where to send it are included: http://bit.ly/KWjE5w
Case reports: CDG 1A
topic, published about 1 month ago
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Just found this rare metabolic disease database today.
There are a few case reports of children with CDG 1a in Spain. Thought it might be interesting to share.
https://www.imbio.de/stable/php/ramedis/htdocs/searchv2/search_diagnosis.php?id=212065
CDG INTERNATIONAL NEWSLETTER JAN. 2012
document, published 3 months ago
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Welcome to the CDG INTERNATIONAL NEWSLETTER presented to you on behalf of the CDG families’ organizations worldwide.
CDG: SENSIBILISATION ET KIT DE DIFFUSION (FR) partie II
document, published 4 months ago
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CDG: SENSIBILISATION ET KIT DE DIFFUSION (FR) partie I
document, published 4 months ago
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Directive on the application of patients' rights in cross-border healthcare
topic, published 4 months ago
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The Network's mission
The Network will bring together the national authorities responsible for eHealth on a voluntary basis to work on common orientations for eHealth. The aim is to ensure EU wide interoperability of electronic health systems and wider use of eHealth. The eHealth Network is ex...
International Rare Disease Research Consortium (IRDiRC)
topic, published 4 months ago
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IRDiRC will team up researchers and funding agencies in order to achieve two main objectives by the year 2020, namely to deliver 200 new therapies for rare diseases and diagnostic tools for most rare diseases.
To post videos or stories
topic, published 4 months ago
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Please we are very much looking for to have more stories and / or videos from CDG families. Tell us if you would like to contribute. You can add your story to the website by going to your Profile --->Tell My Story.
You can suggest a video here, or email robert.pleticha@eurordis.org to have you...
Tools to inform and empower CDG families:
topic, published 4 months ago
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Dear all:
There are several NEW links available :
to download the CDG Fairy tale: http://bit.ly/zIVD0l
an article about the recent mouse model for CDG: http://bit.ly/Ak6Tek
and an interview in the radio done to the Portuguese organization: http://bit.ly/vZd7Rh
Thanks
Clinicaltrials.gov
news, published 4 months ago
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No current trials for CDG here but check back for future trials.