#CDGAwareness

CDG research explained: Because a video is worth a thousand pictures

New Insights into Immunological Involvement in Congenital Disorders of Glycosylation (CDG) from a people approach is the most recent sicentific paper which results from the united efforts of the international CDG Community. 

The project was led by the international CDG research network - CDG & Allies - Professionals and Patient Associations International Network (CDG&aAllies-PPAIN). It entailed an innovative people-centric approach to further explore immunological involvement in CDG.

This video explains the main results of this scientific work in a simple and very visual way.

Find the full paper at https://bit.ly/PaperImmunoCDG

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CDG: A Community of HOPE features Dr Belén Pérez

CDG: A Community of HOPE!

This week's edition features...

Bélen Pérez is an amazing #CDGResearcher dedicated to developing innovative therapies for CDG #PharmacologicalChaperones

Dr Pérez also works closely with CDG Patient Associations and families Aescdg Cdgsindrome

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Some examples of Dr Pérez work, include https://worldcdg.org/index.php/news/2020-05/new-possible-therapeutic-strategy-pmm2-cdg

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.

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World CDG Organization Newsletter - The 1st Edition is out!!!

1st edition

📬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

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CDG: A Community of HOPE features Sandro Bellinzis

Image removed.CDG: A Community of HOPE!Image removed.

This week's edition features...

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

Image removed.When CDG #SLC35A2CDG burst into his (and his Family) life, Sandro felt he needed a Image removed.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

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

He gives us HOPE!Image removed.

#CDGCommunity #CDGDiversity #RareNotAlone

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

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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

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CDG: A Community of HOPE features Vijay Sappani

Image removed.CDG: A Community of HOPE!Image removed.

This edition features...

Image removed.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 AdvocateImage removed. & entrepreneurImage removed..

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

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He gives us HOPE!Image removed.

#CDGCommunity #CDGDiversity #RareNotAlone

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

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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

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CDG: A Community of HOPE features Dr Christina Lam

Image removed.CDG: A Community of HOPE!Image removed.

This edition features...

Image removed.Dr Christina Lam:

-> a Image removed. CDG Professional who is also actively involved in family/patient Image removed.education and Image removed.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 aboutImage removed.).

.She gives us HOPE!Image removed.

#CDGCommunity #CDGDiversity #RareNotAlone

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

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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

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CDG: A Community of HOPE features Merell Liddle

Image removed.CDG: A Community of HOPE!Image removed.

Our guest of honour is Merell LiddleImage removed.:

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

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

She gives us HOPE!Image removed.

#CDGCommunity #CDGDiversity #RareNotAlone

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

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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

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CDG: A Community of HOPE features Dr Mercedes Serrano

Image removed.CDG: A Community of HOPE!Image removed.

We are so happy to host Image removed.Dr Mercedes Serrano!

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

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

She gives us HOPE!Image removed.

#CDGCommunity #CDGDiversity #RareNotAlone

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

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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.

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CDG: A Community of Hope! This week's guest: Barbara Vulso

💚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.

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