APCDG - Congenital Disorders of Glycosylation
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CDG & ALLIES- PPAIN keeps getting stronger and (even) more international

28/10/2017

50 Comments

 
#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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50 Comments

Congenital Disorders of Glycosylation? Come again?

6/10/2017

294 Comments

 
#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💚
294 Comments

The European Accessibility Act: Making Europe more accessible to all

6/10/2017

407 Comments

 
#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
407 Comments

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

6/10/2017

43 Comments

 
#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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43 Comments

Facing the grief by a #CDG Mom

6/10/2017

9 Comments

 
#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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9 Comments

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  • About US
    • What we do
    • Who we help >
      • Research
  • Resources
    • Rare CDG
    • Publications
    • Guia Metabolica
    • CDG Facts
    • Task Force CDG Communication >
      • PMM2-CDG (CDG Ia)
      • PGM1-CDG (CDG It)
      • ALG6-CDG (CDG Ic)
  • EDUCATION
  • Awareness
    • Get involved World CDG Awareness Day 2019 >
      • Go Social World CDG Awareness Day 19
      • Spread World CDG Awareness Day 19
      • Plan An Event World CDG Awareness Day 19
      • Frame your CDG Awareness Campaign 19
      • Go green! Think CDG! ©Campaign 19
      • Volunteer World CDG Awareness Day 19
      • Press kit World CDG Awareness Day 19
    • Map of events for World CDG Awareness Day 2019
    • CrowdCDG
    • Awareness Day 2018
    • Awareness Day 2017
    • Awareness Day 2016
    • Rare Diseases
  • Community
    • Join Us - Membership
    • CDG Patient Groups
    • Empowerment
  • Events
    • 1st CDG Satellite Meeting
    • Speakers - World Conference on CDG 2019
    • Registrations - World Conference on CDG 2019
    • Poster submission - World Conference on CDG 2019
    • Follow up - World Conference on CDG 19
    • Volunteer Registration - World Conference on CDG 2019
    • Previous Edition World Conference on CDG 2017 >
      • Follow up - World Conference on CDG 17
      • Speakers - World Conference on CDG 17
  • DONATE
  • BLOG