Actividad Reciente de Síndrome de CDG

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  CDG INTERNATIONAL NEWSLETTER JAN. 2012
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  Welcome to the CDG INTERNATIONAL NEWSLETTER presented to you on behalf of the CDG families’ organizations worldwide.

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  CDG: SENSIBILISATION ET KIT DE DIFFUSION (FR) partie II
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  CDG: SENSIBILISATION ET KIT DE DIFFUSION (FR) partie I
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  Directive on the application of patients' rights in cross-border healthcare
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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...

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  International Rare Disease Research Consortium (IRDiRC)
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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.

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  To post videos or stories
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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 [email protected] to have you...

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  Tools to inform and empower CDG families:
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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

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

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  Article that correlates Idiopathic dilated cardiomyopathy (DCM) with abnormal protein Nglycosylat...
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  Dear all: Dr Dirk Lefeber from Netherlands and colleagues shared with our community one of their last publicationsand all version is available in this platform in the section learn>documents and the title is:

  Autosomal Recessive Dilated Cardiomyopathy due to DOLK Mutations Results from Abnorm...

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  Autosomal Recessive Dilated Cardiomyopathy due to DOLK Mutations Results from Abnormal Dystroglyc...
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