APCDG - Congenital Disorders of Glycosylation
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This section is an initiative of the CDG Global Task Force on Science and Medical Communication and Outreach


"Coming together is a beginning; keeping together is progress; working together is success", by Henry Ford.

Seven international key opinion leaders joint in a volunteer basis the CDG Global Task Force on Science and Medical Communication and Outreach. The 3 major goals are:
(1)   to increase understanding in a friendly language about the basic, translational and clinical research that is being done in the field of CDG
(2)   to boost the community education & empowerment  
(3)   and to engage the community in relevant topics related to our current Biomedical findings for CDG

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Eva Morava Kozicz MD PhD
Tulane University Medical School, New Orleans, USA. Universiteit Ziekenhuis Leuven, Belgium
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Fiona Waddell,
Patient & Journalist
The Netherlands
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Bobby Ng Human Genetics Program, Sanford Burnham Prebys Medical Discovery Institute, La Jolla, California, USA
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Sandra Pinto
Mother to Martinzinho &
Architect expert on
Universal accessibility
Spain
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Vanessa Ferreira, PhD, MBA
Portugal
Together, they do major efforts to delineate a CDG global plan for communication and outreach. The target audience is: 1st . Families; 2nd . Professionals; 3rd . Media; and 4th . General public. In addition, resources for our community are created by volunteers  (for instance, scientific and medical publications to put on spotlight or press releases highlighting relevant research, to be disseminated among social media and so forth). And finally, we wish to be able to create a Global CDG Science and Medical Communication and Outreach Toolkit. Hopefully, this can be helpful for CDG and related diseases.

VERY IMPORTANT, PLEASE READ IF YOU USE RESOURCES OR DOCUMENTS:
All our work is publicly available to help the CDG community. Importantly, our resources are done by volunteers. If you use our resources, please refer to http://www.apcdg.com/per-cdg-type.html as the source of information. This, help us to ensure that families and professionals know the original source of information. Additionally, you contribute to ensure that updated information reaches within all community . Also, please note that these are educational resources. THANKS!
To request publications write to sindromecdg@gmail.com

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  • About US
    • What we do
    • Who we help >
      • Research
  • Resources
    • Rare CDG
    • Publications
    • Guia Metabolica
    • CDG Facts
    • Task Force CDG Communication >
      • PMM2-CDG (CDG Ia)
      • PGM1-CDG (CDG It)
      • ALG6-CDG (CDG Ic)
  • EDUCATION
  • Awareness
    • Get involved World CDG Awareness Day 2019 >
      • Go Social World CDG Awareness Day 19
      • Spread World CDG Awareness Day 19
      • Plan An Event World CDG Awareness Day 19
      • Frame your CDG Awareness Campaign 19
      • Go green! Think CDG! ©Campaign 19
      • Volunteer World CDG Awareness Day 19
      • Press kit World CDG Awareness Day 19
    • Map of events for World CDG Awareness Day 2019
    • CrowdCDG
    • Awareness Day 2018
    • Awareness Day 2017
    • Awareness Day 2016
    • Rare Diseases
  • Community
    • Join Us - Membership
    • CDG Patient Groups
    • Empowerment
  • Events
    • 1st CDG Satellite Meeting
    • Speakers - World Conference on CDG 2019
    • Registrations - World Conference on CDG 2019
    • Poster submission - World Conference on CDG 2019
    • Follow up - World Conference on CDG 19
    • Volunteer Registration - World Conference on CDG 2019
    • Previous Edition World Conference on CDG 2017 >
      • Follow up - World Conference on CDG 17
      • Speakers - World Conference on CDG 17
  • DONATE
  • BLOG