#CDGcommunity

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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CDG: A Community of Hope starring Dr Andrew Edmondson

💚CDG: A Community of HOPE!💚

We are 🔙 and we couldn't be happier to kick off with an outstanding #CDGProfessional:

-> Dr Andrew Edmondson👨‍⚕️

Dr Edmondson is full-heartedly committed to his #CDG patients and our 🌍 #CDGCommunity

He has even recently co-discovered a new CDG type: GALNT2-CDG.

More information about this new CDG can be found at bit.ly/galnt2WCDG

He 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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Webinar: Let's talk about CDG?

Recording of the webinar "Let's talk CDG?".
This webinar took place on 19 May 2020. It was facilitated by the communication agency -  Miligrama.
Prof Paula Videira and Rita Francisco were the session speakers.

The webinar is in Portuguese, although the slides are in english.

This was both an educational and awareness-raising event, which focused mainly on CDG research.

 

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CDG: A Community of HOPE with Holly Carmichael

💚CDG: A Community of HOPE!💚

👱‍♀️Holly Carmichael is a marvellous CDG Mom and Advocate.
She is full-heartedly💚 committed to making sure her daughter👧 has the best life possible and Holly works every day to ensure that’s what she gets.
She is searching for Maggie's Cure, but through her own personal journey she is helping the entire CDG Community 👨‍🔬👨‍👩‍👧👩‍⚕️

She gives us HOPE!💚

👉❗️Please, subscribe the World CDG Organization Youtube Channel 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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CDG: A Community of HOPE with David Coman

💚CDG: A Community of HOPE!💚

👨‍⚕️Prof. David Coman is a Metabolic Pediatrician making sure CDG families and patients from Down under are well-cared for👪. He is hopeful about the future of CDG patients and highlights the fact that we are now openly discussing different treatments for CDG. 💊🧬

These exciting developments are only happening because of devoted professionals like Prof Coman.
He gives us HOPE!💚
 
👉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. David Coman Miligrama - Comunicação em Saúde

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CDG: A Community of HOPE with Julia Boonak

💚CDG: A Community of HOPE!💚

Next to every great CDG clinical expert👨‍⚕️👩‍⚕️, there is a quickly adapting, always learning and never-giving up CDG Family!

👱‍♀️This is Julia 👪She is a CDG Mom 🦸‍♀️She is a CDG advocate
💭She thinks “one of the most magical things is seeing our families meeting with other families and then sharing experiences”

She gives us HOPE!💚

👉Please, subscribe the ❗️World CDG Organization Youtube Channel at https://www.youtube.com/watch?v=-6sifd38WvU ❗️ 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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