APCDG - Congenital Disorders of Glycosylation
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3rd World Conference on CDG update

16/1/2017

2 Comments

 
#WorldConferenceCDG Registrations are planned to open until the end of January 2017. We are finishing last details of importance for this unique international scientific gathering! Talk to you, soon!!!

For updates, please keep an eye  HERE.
​
Thank you!
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2 Comments

ALL CDG Families can become Reseachers

13/1/2017

1 Comment

 
#CDGResearch Did you know you can advance CDG biomedical research in under 15min? How? Well, fill in the CDG & Liver eQuestionnaire for Families until 15/01/2017. It is available in 4 languages at http://www.apcdg.com/wg-cdg--liver.html . This eQuestionnaire is for ALL CDG Patients – NO Exceptions. NO age limit. Not having been diagnosed or even suspected to have liver disease is also an INCLUSION criteria. Only together will we make a difference! Thank You!
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1 Comment

ALL CDG Families - We need you Help until 15/01/2017!

13/1/2017

1 Comment

 
#CDGResearch LAST deadline extension for CDG & Liver eQuestionnaire (http://www.apcdg.com/project-cdg--liver.html ) completion until 15/01/2017. We are still under our goal of 200 participants! Haven’t had a chance to complete it? Do it NOW! ALL Patients, ALL Ages, with or without liver clinical history. Take 15min to share your knowledge! Available in 4 languages. Thank YOU!
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1 Comment

Patient as Research Partners

11/1/2017

1 Comment

 
#RareDiseasesNews: Patients as partners in Research - Do we want it? YES When do we want it? NOW 
#PatientInvolvement #PatientledResearch #CDGandAllies http://bit.ly/2iHF4wx
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1 Comment

International Thank you Day #CDGCommunity

11/1/2017

1 Comment

 
Today is the International Thank You Day, so let's all be Grateful for all the Rare People in our lives!
​What are you grateful for? 
#CDGCommunity
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1 Comment

CRISPR - Gene Editing Technology gives hope to finding Cures

9/1/2017

1 Comment

 
#RareDiseasesNews: CRISPR - a #GeneEditing technology - was one of the biggest science stories in 2016. So, here is a simple guide to it! http://bit.ly/2iMZGCp #RareCures
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1 Comment

2nd Deadline Extension for the CDG & Liver eQuestionnaire for Families: Make your Voice Heard!

9/1/2017

1 Comment

 
#CDGResearch Liver affectation and CDG = Unsolved puzzle. This is a questionnaire for ALL CDG Patients. ALL Ages with Known or unknown liver disease.
Available in 4 languages at 
http://www.apcdg.com/project-cdg--liver.html.
​Take
 10-15min to advance CDG Research! Help us put the pieces together.

CDG&Allies-PPAIN have built a family-targeted eQuestionnaire to improve knowledge. Only experts (YOU) can help us understand the natural history of CDG – Let’s start with the Liver.
Contribute until 12/01/2017.
Thank YOU!
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1 Comment

Genetics in 2016: Breakthrough, Breakdown, and Bridge

6/1/2017

1 Comment

 
What made science news in 2016?

​Genetics in 2016: Breakthrough, Breakdown, and Bridge gives you a RARE and broad overview of the year 
http://bit.ly/2hgfem1
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1 Comment

2017 - The year of Difference Acceptance & Ability Redefinition

6/1/2017

1 Comment

 
Let 2017 be the year of the Celebration of Difference and of the Redefinition of Ability. This #ProjectoAccept_ability is the work of a portuguese Photographer.

​Sometimes images speak more elonquently! Happy 2017!! 
http://bit.ly/2ikiYTa
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1 Comment

Gene Therapy - What happened in 2016?

6/1/2017

1 Comment

 
" For a few lucky patients, 2016 was the year when #GeneTherapy turned from promises to cures." What does the Future hold?

​Let's start by understanding where we stand 
http://bit.ly/2iLdRwb
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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