Resources
Materials dedicated to Metabolic Diseases Awareness
The Portuguese Association for CDG in collaboration with the international CDG research network - CDG & Allies -PPAIN and worldwide CDG families is generating new educational and awareness materials. These pictures with CDG Facts are an educational way of learning more about CDG and increase awareness about these disorders.
In our blog we are continuously making available publications and related resources considered of major interest for CDG Community. Please visit it for further information.
VERY IMPORTANT, PLEASE READ IF YOU USE OUR 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 http://www.apcdg.com/resources.html as source of information. This helps us to ensure that families and professionals know the original source of information. Additionally, you contribute to ensure that updated information reaches the entire community . Also, please note that these are educational resources (we do not authorize their use for other purposes). THANKS!
In our blog we are continuously making available publications and related resources considered of major interest for CDG Community. Please visit it for further information.
VERY IMPORTANT, PLEASE READ IF YOU USE OUR 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 http://www.apcdg.com/resources.html as source of information. This helps us to ensure that families and professionals know the original source of information. Additionally, you contribute to ensure that updated information reaches the entire community . Also, please note that these are educational resources (we do not authorize their use for other purposes). THANKS!
CDG Facts!
To increase CDG awareness at global level. These resources belong to the World CDG-AED program 2018-2022 (CDG - Awareness. Education. Diagnosis) .
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CDG Fact #1
Did you know that… Congenital Disorders of Glycosylation (CDG) are a rapidly growing family of rare, metabolic diseases? Think Metabolic, Think CDG! Download available in: English |
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CDG Fact #2
Did you know that… Congenital Disorders of Glycosylation (CDG) are caused by defects in the cellular machinery responsible for making, and altering sugars and attaching them to proteins and lipids. Sugars are essential for our cells and organs. Be sweet, help us raise awareness for these metabolic diseases CDG! Think Metabolic, Think CDG! Download available in: English |
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CDG Fact #3
Did you know that… Congenital Disorders of Glycosylation (CDG) are one of the fastest growing group of metabolic disorders? There are over 130 different CDG types (which are forms/variations of the disease). Make sure you (and everyone you know) get the CDG Facts (right)! Think Metabolic, Think CDG! Download available in: English |
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CDG Fact #4
Did you know that… Living with Congenital Disorders of Glycosylation (CDG) means that you face numerous challenges EVERY DAY? CDG children and adults often have many organs affected and their lives if often at risk. They have to do many therapies, and take medication or even undergo surgery to keep as healthy as possible. Think Metabolic, Think CDG! Download available in: English |
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CDG Fact #5
Did you know that… The eyes are one of organs which is most frequently affected in CDG children and adults (and across the different CDG types)? Strabismus (crossed eyes), myopia (nearsightedness), cataracts or retinitis pigmentosa are some of the eye problems seen in CDG. But, many other organs and systems can be affected in CDG, such as the brain, heart, liver, immune system or the bones. Think Metabolic, Think CDG! Download available in: English |
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CDG Fact #6
Did you know that… Congenital Disorders of Glycosylation (CDG) are such complicated and complex diseases that even siblings with the same condition can have very different clinical manifestations? That is yet another reason why CDG is so hard to diagnose – It can puzzle and deceive you (doctors, researchers and other healthcare professionals) in so many ways! So next time you find yourself thinking “This could be metabolic”, test for CDG! Think Metabolic, Think CDG! Download available in: English |
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CDG Banner
Put metabolic disorders on the MAP! Think Metabolic, Think CDG! Download available in: English |
Other CDG resources
If you'd like to have other resources about CDG diagnosis, management, awareness and about many other topics, visit HERE.
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