APCDG - Congenital Disorders of Glycosylation
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      • Follow up - World Conference on CDG 17
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Maltese EU Presidency gives Top priority to Rare Diseases

22/3/2017

2 Comments

 
#RareDiseasesNews: The Maltese Presidency of the EU Council has brought Rare Diseases to the top of their priorities list! Collaboration and information sharing between member states has been highlighted as crucial.
​Read the full article HERE
EURORDIS press release to know more about the action plan. 
The press release is available HERE
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2 Comments

CDG&Allies-PPAIN work presented in SPDM

21/3/2017

2 Comments

 
#CDGResearch:CDG&Allies-PPAIN had another work accepted at an International Symposium.
Dr Dorinda da Silva presented her work on Liver Involvement in CDG also featuring some preliminary results of the online liver questionnaire.

Congratulations Dr Dorinda!
It is very rewarding to see the scientific community recognize CDG&Allies-PPAIN work! 
#SPDM
Know more about the work of Working Group CDG & Liver HERE 
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2 Comments

Welcome Spring

21/3/2017

2 Comments

 
Spring, we had been waiting for you! #WelcomeSpring #CDGCommunity
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Leuven, 15-16th July 217 - 3rd World Conference on CDG - REGISTER NOW

21/3/2017

2 Comments

 
#WorldCDGConference: 3rd World Conference on CDG is a unique event - Patients, Families & Professionals are gathered to discuss, exchange knowledge and create new opportunities! In order to advance CDG research and knowledge,
ALL experts are needed! We need YOU!
REGISTER NOW HERE 
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2 Comments

Liver Involvement in CDG explained in a Patient-Friendly Document

20/3/2017

2 Comments

 
#CDGResearch Download HERE a community friendly document derived from the recently published scientific article “Liver involvement in Congenital Disorders of Glycosylation (CDG)”,
Please keep in mind that this document is accessible in a FREE basis.
​This was done by a group of enthusiastic volunteers of our network!
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2 Comments

CDG CARE Grant Program for Families

20/3/2017

2 Comments

 
#CDGNews:CDG CARE has created Grant Programs for CDG Families!
Learn more and be informed about updates at 
CDG CARE and HERE 
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2 Comments

Registrations for the 3rd World CDG Conference are NOW OPEN!

20/3/2017

2 Comments

 
#WorldCDGConference: 80 participants have pre-registered for the 3rd World Conference on CDG - 15-16th July Leuven (Belgium)!
Why don't you join us as well?
This conference is dedicated to both Families & Professionals and covers a wide range of important topics! It is also a great opportunity to network.
​REGISTER NOW HERE
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2 Comments

Rare Disease Film Festival - an awareness and talent showcase

17/3/2017

2 Comments

 
#RareDiseasesNews:The Rare Disease Film Festival is a 1 day event taking place on October 3rd in Boston,USA.
This Rare Festival showcases films or documentaries (most under 20min) that show the reality of living with a Rare Disease.
An incredible awareness and talent display.
Why not take out your camera?
ACTION!
Know more HERE 
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2 Comments

Let's Raise Physician Awareness!

16/3/2017

2 Comments

 
#RareDiseasesNews: In Rare Diseases physician awareness is still a great unmet need! Know more HERE.
Let's change it!
To raise CDG awareness among Physicians use APCDG Publication service (visit HERE) 
 & Resources (visit HERE) .
​Better informed Professionals will lead to better Care!
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2 Comments

The European Reference Networks - Making expertise on Rare Diseases COMMON throughout Europe

14/3/2017

2 Comments

 
#RareDiseasesNews:The European Reference Networks for Rare Disease promote knowledge and expertise SHARING, improve patient CARE and accelarate the process of finding a CURE! Share this video and promote Awareness!
​
2 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