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What is CDG?

Welcome! There are many (possible) reasons that have led you here. Regardless of your story, if you are here, you have heard the word CDG. 

First, you are not alone. Though CDG is categorized as “rare” there is a huge active global community at your fingertips working day and night to improve the lives of many people living with CDG and their family members. We want you to know everything that is available, but we suggest you enter into it at your own pace and comfort level.

CDG stands for Congenital Disorders of Glycosylation. Let’s break this apparently complex concept down: 

  • Congenital means that a condition exists from birth even if some symptoms are only visible later in life.
  • Disorder means that the normal function of the body is disturbed or compromised.
  • Glycosylation is a process that makes sure that our proteins and fats, which are essential components of our body, can play their role in our cells and organs and ensure that we stay healthy! 
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Glycosylation is a multi-step mechanism that assembles and processes complex sugar trees which are then attached to our proteins and fats endowing them with novel capabilities. When someone has a defect in a step necessary for a normal glycosylation, we say that person lives with CDG. 

Mayo Clinic Congenital Disorders of Glycosylation Clinic has released the video below that helps you better understand what CDG is. A powerpoint is also available here.


For further information you can watch the following video lecture by Andrey K below:

Watch below the training webinar Rare Diseases are Not Rare – A Training on Rare Disease Resources shared by Network of the National Library of Medicine [NNLM], to help you 

  • Understand what defines a rare disease;
  • Know more about rare diseases and the diagnosis journey; 
  • Learn more about the importance of research in the diagnosis and treatment of rare diseases;
  • Learn more about resources that health and health information professionals can use to support individuals with rare diseases.



“It is of extreme importance that every person in the CDG community becomes one united voice and takes every conquest in a specific CDG as a victory for the whole community. It is important to keep this in mind because CDG are all connected and a new finding regarding one of them will give tools to improve basic and therapeutic research in the others.” By Vanessa Ferreira, sister to Princess Liliana who lives with CDG.

Learn more about CDG, move ahead to our community tailored sections across and across the following reliable sources of information

  • Section dedicated to CDG from Children’s hospital of Philadelphia here
  • NORD offers an overview about CDG here
  • Visit the new Genetic and Rare Diseases (GARD) Information Center Website here. Also to know its features watch Rare Diseases are Not Rare – A Training on Rare Disease Resources
  • Mayo Clinic Congenital Disorders of Glycosylation (CDG) Clinic sees website here
  • Orphanet, the portal for rare diseases and orphan drugs offers summaries here

We are here to help
Should you need more details please do get in touch with our Team

Ensure that you are up to date, and join our mailing list:

 Subscribe our World CDG magazine

For further learning about CDG, move ahead to our community tailored sections across  


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Vanessa Ferreira and Rita Francisco (CDG & Allies, World CDG organisation and Portuguese Association for CDG), Alice Neves from Sci and Volunteer Program Nova School of Science and Technology 2021. Ana Sofia Rodrigues (content management, CDG & Allies FCT, NOVA University, World CDG Organization and Portuguese Association for CDG).


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

Page modified at Wednesday, June 22, 2022 - 14:55