APCDG - Congenital Disorders of Glycosylation
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"Liver involvement in congenital disorders of glycosylation (CDG). A systematic review of the literature"

30/1/2017

35 Comments

 
This ​is the title of the most recent article from the international research network - CDG&Allies-PPAIN. 
This article analyses and explains liver affectation in CDG patients. This work was done by WG CDG & Liver.

To access the article's abstract, visit HERE.
If you are interest in getting the manuscript, please write to sindromecdg@gmail.com.
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35 Comments

Workshop "Think Metabolic, Think CDG" an educational initiative to Celebrate #RareDiseaseDay

30/1/2017

6 Comments

 
​"Think Metabolic, Think CDG" is a workshop organized by the Portuguese Association for CDG (APCDG) in collaboration with Centro Hospitalar Universitário de Coimbra. It will take place in Ordem dos Médicos, Coimbra, Portugal on 27th February 2017. This workshop aims to raise awareness for CDG, but also to join the celebrations of #RareDiseaseDay 2017.

This event will count with the presence of Prof Jaak Jaeken, the medical doctor who described CDG for the first time in 1980. Lectures among CDG diagnosis, CDG & Liver, CDG recognisable phenotypes and other themes of relevance for rare diseases in general will be presented at the workshop.

Everyone is welcome - Physicians, Researchers, Families and the general public!
Resgistration is FREE,but MANDATORY and limited to the number of seats available.. Register HERE.

We are looking forward to meeting you there!
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6 Comments

New physician - Dr Peter Witters - joins international research network for CDG

26/1/2017

3 Comments

 
Dr Peter Witters, a hepatologist from KU Leuven, Belgium is a new member of CDG&Allies-PPAIN - Working Group CDG & Liver (visit HERE).
More and more professionals are joining this unique research network. It is extremely important to have an international network that aggregates experts and avoids effort duplication, whilst being led and inspired by patients and families' needs.

ALL professionals and volunteers are extremely committed to improving the lives of CDG Patients.

Thank you Dr Witters!
Welcome!
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3 Comments

With Research Possibilities are limitless - Rare Disease Day 2017

26/1/2017

1 Comment

 
"With Research Possibilities are endless" - this is the offical motto of the #RareDiseaseDay 2017.
​
Spread the word and #SupportCDGResearch. 
Learn more about the endless possibilities CDG&Allies- Professionals and Patient Associations International Network (CDG&Allies-PPAIN, visit HERE) are creating for the CDG community.

1 Comment

Thank You to ALL CDG Families who completed the CDG&Liver eQuestionnire - We made history in CDG Research!

23/1/2017

1 Comment

 
#CDGResearch We would like to Thank ALL who contributed to the CDG&Liver eQuestionnaire! Thank you for advancing CDG Research! We truly appreciate your time, effort and expertise! Thank YOU! Obrigada! Merci! Gracias!
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1 Comment

#BiocomesticforCDGResearch: Join our campaign

19/1/2017

1 Comment

 
These handmade lavender body butter will 1) leave you skin moister and hydrated 2)Create CDG Research Projects. CDG are RARE Diseases for which there is NO CURE. ALL Nabia Portugal's products have a very special ingredient: CDG solidarity.

Email: biocosmeticforesearch@gmail.com.
More at 
http://bit.ly/2hYkUN0
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1 Comment

Genomic imprinting and Rare Diseases: A silent combination

19/1/2017

1 Comment

 
What do Silver-Russell syndrome and Beckwith-Wiedemann syndrome have in common?
Have your heard about genomic imprinting? It is an epigenetic mechanism through which a certain gene(s) is silenced or expressed in a parent-specific manner.
​
Another outstanding example of how Rare Diseases' Research can drastically improve knowlege 
 http://bit.ly/2jAP4XP
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1 Comment

Only 1 Day left to contribute the CDG & Liver eQuestionnaire for ALL CDG Patients

18/1/2017

1 Comment

 
LAST Call for ALL CDG Families to complete the CDG & Liver eQuestionnaire (http://www.apcdg.com/project-cdg--liver.html ). It’s YOUR Last chance to make the difference. Only together can we advance CDG Research – So, please, get on board - the CDG Community needs YOU!

It takes 15min to complete and it’s available in 4 languages!
ALL CDG Patients***NO Age Limit***With or Without Liver clinical history***

For us to reach our goal of 200 participantes, we need YOU until TOMORROW!
Thank YOU!
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1 Comment

20 CDG Patients away from our goal - We need YOU to advance CDG Research

17/1/2017

1 Comment

 
 This is the CDG & Liver Questionnaire (http://www.apcdg.com/project-cdg--liver.html ) final countdown, but YOU can still be part of it! ALL CDG Patients – ALL Ages – With or without liver problems – Available in 4 languages - This is your questionnaire. It is about YOU!

We still need 20 more families to reach our 200 goal. YOU still have until 19/01/2017 to make your contribution to CDG Research.

It takes 15min to complete!

Let us ALL Count you In!

Thank YOU!
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1 Comment

CDG Italia  - patient group has a new "Home"

17/1/2017

1 Comment

 
​#CDGNews: CDG Italia - the italian patient association for CDG - has lauched a new website.Congratulations to this CDG Association for their continuous work and efforts to promote CDG awareness and research.

​Don't miss the opportunity to visit their new online home at http://www.cdgitalia.org/.

To see more CDG Patients groups visit HERE
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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