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How can you help our CDG community? Is easy! Share among your social media and other channels the information we make available within this section and website. This makes more people aware of CDG, speeds up diagnosis, and gives our CDG children and adults better care and management!

Educating yourself about CDG is vital. People living with CDG, and their family members often seek information and resources on the internet about disease prognosis, find a specialist, and obtain a diagnosis for symptoms. A major reason includes a growing interest in participating in clinical research studies and a desire to complement or better understand information discussed during a visit with a healthcare provider. The internet can be a great resource. Choosing which websites to trust is an important step in gathering reliable health information and resources dedicated to CDG. 

In this section you will find: 

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Should you need more details please do get in touch with our Team

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Vanessa Ferreira (CDG & Allies FCT, NOVA University, World CDG Organization and Portuguese Association for CDG)


Ana Verde (collaborator at CDG & Allies FCT, NOVA University), Javier López and Kevin Aguirre (research volunteers at CDG & Allies FCT, NOVA University)

Content managers

Marisa Godinho (collaborator at CDG & Allies FCT, NOVA University)


The Site cannot and does not contain medical or health advice. The information is provided for general informational and educational purposes only and is not a substitute for professional advice.

Accordingly, before taking any actions based upon such information, we encourage you to consult with the appropriate professionals. We do not provide any kind of medical or health advice. The use or reliance of any information contained on this site is solely at your own risk.

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Congenital Disorders of Glycosylation
Information-seeking behavior
Consumer health information
Focus groups
Computer literacy
Information services
Consumer health information
Chronic disease
Health information search
Seeking behavior
Information needs
Online health information seeking
Social media

Page modified at Friday, November 25, 2022 - 14:52