CDG Canada

CDG Canada is a CRA registered charity. It is a national organization supporting patients and families affected by Congenital Disorders of #Glycosylation

[CDG Hub @CdgHub]

New CDG pages are published on #cdghub ! Learn more about disorders of N-linked #glycosylation ALG2-, ALG9-, ALG11-, ALG14- & DPAGT1- CDG here https://t.co/lkPTWM3eo3

[Rare Diseases Clinical Research Network @rarediseasesnet]

New research from @FrontierCDG:

✅ Researchers Describe GMPPA-#CongenitalDisorderOfGlycosylation, a Rare Cause of Pediatric #Achalasia

Read more: https://t.co/QTBkXGWALg

[Carlota Pascoal @CarlotaPascoal]

Proud of our most recent publication🎉 a direct result of joining families and professionals in the same room, giving them equal voices to tackle those shared hurdles 🥰
https://t.co/rYDaO6yGeq
@worldCDG @CDG_MDPhD @FrontierCDG @CdgHub @CDGCAREorg

[The Journal of Inherited Metabolic Disease @JIMD_Editors]

CDG or not CDG
Hudson H. Freeze, Jaak Jaeken and Gert Matthijs
https://t.co/Es8lOUPMlp

@CDG_MDPhD @cdgcanada @cdgsindrome @UK_CDG @FrontierCDG @emoravakozicz

[CDG Canada @cdgcanada]

Happy CDG Awareness Day!

Let's come together to raise awareness & #StandUnited4CDG !

#WorldCDGDay #raredisease #CDGAwareness #CDGGoGreen

[CDG Canada @cdgcanada]

the global CDG community has created so many awesome resources for patients & families - now all in once place on CDG Hub!

#CDGHub #WorldCDGDay #glycosylation #raredisease

[CDG Hub @CdgHub]

CDG Hub has curated resources for CDG patients & families to help them learn about CDG, therapies, clinical studies & connect with other CDG families

Visit the “Resources” page to learn more
https://t.co/LtdXjgYyjy

#CDGHub #WorldCDGDay #glycosylation

[CDG Hub @CdgHub]

Discover researchers who are working to better understand CDG, improve diagnosis and develop new treatments or cures. Find potential collaborators to accelerate discoveries on CDG! Visit the “Researchers” page to learn more!

https://t.co/jRalpaQJti

#CDGHub #WorldCDGDay #CDG

[CDG Hub @CdgHub]

CDG Hub maintains a growing list of expert clinicians & centres diagnosing, treating & researching CDG. Search for CDG experts by country & areas of specialty. Visit the “CDG Clinicians & Centres” page to learn more!

https://t.co/oJMyN36tSu

#CDGHub #WorldCDGDay #glycosylation

[CDG Canada @cdgcanada]

CDG Hub is live! Check out the first online knowledge base of congenital disorders glycosylation. An awesome resource to learn more about CDG!

#CDGHub #WorldCDGDay #CDG #glycosylation

[CDG Hub @CdgHub]

We are excited to announce the launch of CDG Hub! It’s designed to educate researchers, clinicians, patients and families on CDG. Our goal is to help unite the CDG community, increase public awareness, and inspire collaborative research.

#CDGHub #WorldCDGDay #CDG #glycosylation

[FCDGC @FrontierCDG]

Just published data from the FCDGC Natural History study regarding patient-reported outcomes and quality of life for #PMM2-#CDG https://t.co/dzVxOflE1F

[FCDGC @FrontierCDG]

#CDG makes #RareDiseaseDay news with #EDEM3-#CDG discovery by #FCDGC researcher, Dr. Andrew Edmondson (@CDG_MDPhD) @ChildrensPhila
Stephanie Stahl reports, RDD is about highlighting that having a rare disease is not rare. https://t.co/c5d2XSGSV4

[CDG Canada @cdgcanada]

Today CDG Canada is celebrating Rare Disease Day!

We stand UNITED in raising awareness of rare diseases, including CDG, and the unique challenges faced by families affected by rare disease.

#RareDiseaseDay2022 #cdg #glycosylation

[FCDGC @FrontierCDG]

#FCDGC reveal of new informational video regarding
CDG #ClinicalTrials at the #rarediseaseday #CDG/#NGLY1 Family Conference https://t.co/fS0tlXFJ1p @CDGCAREorg @worldCDG @cdgcanada @AmourFund @MexicoCdg @UK_CDG @cdgsindrome @LesPtitsCDG @rarediseasesnet

[Ethan Perlstein 1-to-N @eperlste]

Prof Hamed Jafar-Nejad’s talk:

Tracing the #NGLY1 Footprints, insights from Drosophila.

Good time to remind folks that @PerlaraPBC and @ChowLab have identified multiple drug repurposing candidates like aripiprazole, trimipramine and lithium for #NGLY1 using flies since 2018.

[CDG Canada @cdgcanada]

#CDGFacts more than 400 genes are involved in #glycosylation

#CDG #RareDiseaseDay2022 #RareDisease

[CDG Canada @cdgcanada]

#CDGFACTS congenital disorders of glycosylation (CDG) are a large group of rare #genetic diseases caused by defects in glycosylation. There are more than 160 different CDG types, with more being discovered each year.
#RareDiseaseDay2022 #RareDisease #glycosylation #CDG

[CDG Canada @cdgcanada]

Did you know 1 in 12 Canadians has a #raredisorder ? That’s 300 million Canadians who are facing a debilitating disease that impacts their lives.
#RareDiseaseDay2022 #RareDisease #CDG #glycosylation

[Claudia Gonzaga-Jauregui @cgonzagaj]

In honor of #RareDiseaseDay @ElsevierConnect has made some content freely available to educate & raise awareness on #RareDiseases, including selected chapters from our book #GenomicsOfRareDiseases for 2 months from Feb28! Check the available content here:
https://t.co/2zqOQwFJlJ

[Sappani Foundation @SappaniFDN]

Sappani Foundation and @CureSrd5a3 are pleased to support the research work at @sbpdiscovery and @CDGCAREorg . We also support @cdgcanada on research work in Canada. #RareDisease

[World CDG Organization @worldCDG]

#CDGResearch

🔎 For us it is very important to advance research in CDG.

You can help too by participating in the survey and telling us, for example, the causes of hospitalizations of the CDG patient.

👉It is Anonymous and must be answered by April 3rd: https://t.co/L5rNnhDIQU