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WCDGO is led and operated on a volunteer basis by CDG & Allies Professionals and Patient Associations International Research Network (CDG & Allies PPAIN). CDG & Allies PPAIN is based at   NOVA School of Science and Technology (FCT NOVA. For more information visit FCT NOVA). Learn more about at https://worldcdg.org/about-wcdgo 

First, back to 2020, we launched this website, and some of the pages and features are still in development. We will continue to add and improve content over time. We provide general information about CDG, key topics in the field of rare diseases and clinical studies. We are unable to make a diagnosis or to give personal medical advice.

You can help us make the website better by providing feedback using the feedback form. 

Also note that we rely on donations in order to continue our Website and research projects. Thus, we know how to do a lot with very modest budgets. However, we still need your donation to help us do our work. If you wish to help directly our laboratory move to https://worldcdg.org/donation 

The WCDGO website gathers information about CDG from reliable research databases to make it easier for individuals living with CDG, families, and caregivers to find the information they seek. We also identify and select transversal topics from other conditions that may help our community. These sources include, peer-reviewed journal articles, randomized clinical trials, and clinical trials. Occasionally, books and selected websites can be good sources of reliable, evidence-based information. 

Some of the key content now available for you is: 

• About CDG at https://worldcdg.org/about-cdg 
• CDG Journey Mapping at https://worldcdg.org/index.php/research/cdg-journey-mapping 
• CDG therapies at https://worldcdg.org/therapies 
• CDG Drug development pipeline at https://worldcdg.org/index.php/drug-development/pipeline 
• Introduction to Real-World Data & Evidence at https://worldcdg.org/index.php/drug-development-rwd-rwe/introduction-real-world-data-evidence 
• Explore Clinical Trials at https://worldcdg.org/clinical-trials/explore-clinical-trials 
• Epidemiology and why is important at https://worldcdg.org/research/epidemiology 
• CDG resources at https://worldcdg.org/resources 

Note that some of the pages and features are still in development. We will continue to add and improve content over time.

To learn more about CDG, move ahead to our community tailored sections across https://worldcdg.org/

Though CDG is categorised as “rare” there is an amazing 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 about CDG and therapeutic research in lay language that is available, but we suggest you enter into it at your own pace and comfort level.

LOVE is the common language among CDG families. 

Find a list of CDG patient organizations and national advocates from different countries at https://worldcdg.org/about-wcdgo/our-cdg-community 

To learn more about rare diseases in geenral, move ahead to our community tailored sections across https://worldcdg.org/  

Finding a powerful CDG community is just a click away. Join us. 

“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. 

Contact us

Use the contact form to send your question to a WCDGO volunteer collaborator at https://worldcdg.org/index.php/contact 

Please allow 10 to 15 business days for us to respond.

You may wish to contact us if:

• You are having a hard time finding a CDG type you are seeking on our website
• You need help finding more information, resources, specialists, or clinical studies
• You or someone you are caring for is undiagnosed or has suspicious of CDG 

Important: WCDGO provides information about CDG and topics of interest around rare diseases for your general knowledge and is not a substitute for a doctor's advice.