Blog Archives

CDG & ALLIES- PPAIN keeps getting stronger and (even) more international

28/10/2017

#CDGNews We are just so thrilled to announce that Eleonora Passeri has joined our international #CDGResearch network!!
Eleonora is both a science and social media consultant and we are very lucky to count with her expertise and motivation.
To know more about Eleonora, read her biography HERE
Also, you can't miss her #RareTalk interview HERE.
Welcome Eleonora!
The CDG Community is very glad to have you join us - We know that Together we'll do great things!

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Congenital Disorders of Glycosylation? Come again?

6/10/2017

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#RareDiseasesNews:What is #CDG? It stands for Congenital Disorders of Glycosylation and these are a group of metabolic disorders with over 100 different types.
The most common form is called PMM2-CDG. Watch this video to know more, share and like it to raise #Awareness! Thank you💚

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The European Accessibility Act: Making Europe more accessible to all

6/10/2017

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#RareDiseasesNews:The “European Accessibility Act” has been approved by the European Parliament and promises to improve the quality of life of people living with a disability 👏🤞Know more HERE

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What are your research priorities? Tell that to EURORDIS in 5min

6/10/2017

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#RareDiseasesNews: EURORDIS - European Rare Diseases Organisationhas launched a new 5min-long survey for patients and families around the world to share their views on RESEARCH. You can contribute until October 26. Let's make the CDG Voice Heard, Let's identify our priorities as a Community! The survey is available in 23 languages!
Find it HERE

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Facing the grief by a #CDG Mom

6/10/2017

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#RareDiseasesNews:There are times when #SpecialNeeds parents and caregivers just feel overwhelmed, negative with their heads filled with What Ifs that either lead to the darkest possible scenario or to a dead end of frustration/saddness/anger.
The advice of this special Mom is "Go there if you have to, but be brief. And always come back. "We agree with her 100%! What about you? #CDG 👌💚
Read it all HERE

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CDG & ALLIES- PPAIN keeps getting stronger and (even) more international

Congenital Disorders of Glycosylation? Come again?

The European Accessibility Act: Making Europe more accessible to all

What are your research priorities? Tell that to EURORDIS in 5min

Facing the grief by a #CDG Mom

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