#CDGAwareness

?World CDG Organization Newsletter: 1st EDITION is out!

‼️Read All about it HERE  ‼️

?. ?. ✊

Share. Unite. Empower2Act

Would you like to be a CDG Voice in the World ??#CDGWorldVoice

?‍??‍⚕️Do you have any important research highlights?

✊Is your CDG patient association promoting a ? initiative?

?‍?‍?‍?Do you want to share your personal CDG story?

Write to sindromecdg@gmail.com and we will include your exciting news in the next edition (November 2020).

?Please send word until 5 November 2020

CDG: A Community of HOPE!

This week's edition features...

Sandro Bellinzis is a loving CDG Dad and an invested advocate.

When CDG #SLC35A2CDG burst into his (and his Family) life, Sandro felt he needed a door to knock on but he couldn't find any.

That is why Sandro decided to take matters into his own hands, creating

CDG Italia

.

Sandro didn't only build a , he has built a house full of information and comfort to be shared with other #CDGFamilies.

He gives us HOPE!

#CDGCommunity #CDGDiversity #RareNotAlone

Please, subscribe the World CDG Organization Youtube Channel at bit.ly/CDGYoutube to get this and other exciting content

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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. There are over 140 different CDG types

CDG: A Community of HOPE!

This edition features...

Vijay Sappani, a CDG Father who describes CDG as "a complete life changer".

Besides working daily on making sure his daughter needs are met, Vijay is also a committed CDG Advocate & entrepreneur.

CDG changed Vijay's life, he is now working towards ensuring that his contribution changes the lives of the #CDGCommunity for the better!

.

He gives us HOPE!

#CDGCommunity #CDGDiversity #RareNotAlone

Please, subscribe the World CDG Organization Youtube Channel at bit.ly/CDGYoutube to get this and other exciting content

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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. There are over 140 different CDG types

CDG: A Community of HOPE!

This edition features...

Dr Christina Lam:

-> a CDG Professional who is also actively involved in family/patient education and empowerment.

"As a physician, It brings me joy to come to see these individuals with CDG". And, Dr Lam for sure brings joy and comfort to all the (many, many!) CDG patients and families she cares for (and about).

.She gives us HOPE!

#CDGCommunity #CDGDiversity #RareNotAlone

Please, subscribe the World CDG Organization Youtube Channel at bit.ly/CDGYoutube to get this and other exciting content

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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. There are over 140 different CDG types

CDG: A Community of HOPE!

Our guest of honour is Merell Liddle:

1) CDG Mom; 2) CDG advocate extraordinaire, and; 3) amazing Woman!

She has been a very active member of the #CDGCommunity: from research partner, to conference speaker, to language and communication expert, to empowering advocate - she has done it ALL and helped so many while doing it!

She gives us HOPE!

#CDGCommunity #CDGDiversity #RareNotAlone

Please, subscribe the World CDG Organization Youtube Channel at bit.ly/CDGYoutube to get this and other exciting content

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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. There are over 140 different CDG types

CDG: A Community of HOPE!

We are so happy to host Dr Mercedes Serrano!

Dr Serrano is a CDG leading specialist. Based in Barcelona, she works very closely with the Spanish #CDGCommunity, but with our community too.

She has been leading a clinical trial for PMM2-CDG (repurposing acetazolomide for the treatment of cerebellum-associated manifestations)

She gives us HOPE!

#CDGCommunity #CDGDiversity #RareNotAlone

Please, subscribe the World CDG Organization Youtube Channel at bit.ly/CDGYoutube to get this and other exciting content

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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. There are over 140 different CDG types.

?CDG: A Community of HOPE!?

Starring today in our #CDGAwareness campaign is Barbara Vulso ?‍?:
-> A loving CDG Mom and fierce advocate who has repeatdly put her powerful voice to the service of the #CDGCommunity ?<-
Her journey, her strength and courage are so inspirational!

She gives us HOPE!?
#CDGCommunity #CDGDiversity #RareNotAlone
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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. There are over 140 different CDG types.