APCDG - Congenital Disorders of Glycosylation
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Drug reporpusing - Old drugs learn new tricks? 

31/3/2017

2 Comments

 
#RareDiseasesNews:Could drug reporpusing save thousands of Rare Disease Patients? #OldDrugsmadeNew #OffLabelUse 
Full article available HERE 
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2 Comments

The Largest Gene Sequencing Initiative EVER

31/3/2017

2 Comments

 
#RareDiseasesNews:The Largest Gene Sequencing Initiative on World: How can this enormous database molde Drug Discovery & Disease Diagnosis? #GenomicMedicine 
Read more HERE 
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2 Comments

The meaning and feeling of Rareness

30/3/2017

20 Comments

 
#RareDiseasesNews: "What does Rare Disease mean to you?"
Find out more HERE 
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20 Comments

CDG World Conference

30/3/2017

3 Comments

 
#WorldCDGConference: Have you already looked for the agenda of the 3rd World Conference on CDG? No?! Click HERE  and see how impactful it will be!
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3 Comments

Nike's accessible collection - Just Do It!

30/3/2017

3 Comments

 
#RareDiseasesNews: Nike is improving its collection of accessible shoes - FlyEase lineup. Just do it, Nike! #SocialInclusion 
Know more HERE 
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3 Comments

Liver involvement in Congenital Disorders of Glycosylation (CDG)

30/3/2017

2 Comments

 
#CDGResearch Do you know how many articles we have found to write our revision of literature “Liver involvement in Congenital Disorders of Glycosylation (CDG)”? This work can be found HERE.
​
***Follow our CDG led research on CDG & allies PPAIN, the CDG international research network led by CDG patients and families in full collaboration with physicians and researchers.***
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2 Comments

Do you know who will be joining us for the 3rd World Conference on CDG? Find out!

27/3/2017

1 Comment

 
#WorldCDGConference: Did you know that Dr. Christian Thiel will be present on the 3rd World Conference on CDG to talk about Diagnostic tools? Curious?
Learn more about the
Speakers that will be present on at this CDG special event HERE
Register HERE 
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1 Comment

On the other end - The spectrum of severity in CDG

27/3/2017

1 Comment

 
#RareDiseasesNews: Most Rare Diseases are highly heterogeneous.
There is a spectrum of disease severity.
No one wants to be at the other end, but the truth is that some (unfortunately) are.
STOP being severe on yourself and just keep fighting - You are doing a great job! 
#CDG
Read the full article HERE

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1 Comment

CDG Meeting for Parents, Patients and Physicians in New Orleans, USA

24/3/2017

2 Comments

 
#CDGNews: On May 9 and 10th at the Hayward Genetics Center, Tulane University Medical School (New Orleans, USA) the 2017 NOLA CDG Parent, Patient & Physician meeting will take place. An educational event, which will also raise awareness for CDG!

To know more about the event's Agenda, download it below:
2017_nola_cdg_parent_patient_and_physician_meeting_program_.pdf
File Size: 257 kb
File Type: pdf
Download File

Additional registration through Eva Morava-Kozicz emoravakozicz@tulane.edu
​
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2 Comments

Join us in shaping the future for the CDG Community - 3rd World Conference on CDG

22/3/2017

1 Comment

 
#WorldCDGConference: Still unsure about joining the CDG Community in Leuven?
Learn more about the Conference & Speakers HERE 
and HERE.
United we will shape the future for CDG Children and Adults!
REGISTER NOW HERE
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1 Comment
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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