Activité récente dans la communauté Le syndrome CDG

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  CDG INTERNATIONAL eNEWSLETTER (MAY 2012)
  document, publié il y a environ 22 heures

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  In this newsletter we are pleased to announce that the undoubted highlights are four important meetings which we cover in more detail in this newsletter.

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  Conference Registration Chicago 2012
  topic, publié il y a 8 jours

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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

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  Case reports: CDG 1A
  topic, publié il y a environ 1 mois

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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

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  CDG INTERNATIONAL NEWSLETTER JAN. 2012
  document, publié il y a 3 mois

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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
  document, publié il y a 4 mois

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  CDG: SENSIBILISATION ET KIT DE DIFFUSION (FR) partie I
  document, publié il y a 4 mois

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  Directive on the application of patients' rights in cross-border healthcare
  topic, publié il y a 4 mois

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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)
  topic, publié il y a 4 mois

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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
  topic, publié il y a 4 mois

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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...

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  Tools to inform and empower CDG families:
  topic, publié il y a 4 mois

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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