#rareNOTalone

CDG: A Community of HOPE features Cristina Pérez Navas

💚CDG: A Community of HOPE!💚

Our interview today features Cristina Pérez Navas, a dedicated CDG mom and advocate.

She will tell us how the CDG diagnostic changed her life and also how the work of the Spanish CDG Association (AESCDG) is helping #CDGpatients and their families.

She gives us HOPE! 💚

 

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 Paola de Haas

💚CDG: A Community of HOPE!💚

Paola de Haas is one of the young faces of CDG Research 👩‍🔬 at the Radboud university medical center (Nijmegen, Netherlands). She shares that she dedicates her work to develop CDG models and study immunology in CDG. Currently, she is working with a zebrafish CDG model to understand the mechanisms behind the immune issues observed in CDG patients. With this work, she is contributing to what she thinks is the main need in CDG research: to build as much knowledge as possible that in the future can be translated into therapeutic options.

She gives us HOPE!💚

# CDGResearch #CDGCommunity #RareNotAlone

 

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 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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