Joined March 2022
8 Photos and videos
CDG Hub retweeted
🚨 The Curetopia Auction is LIVE! 10,000 rare diseases ignored by Big Pharma It's time to leave the system behind The first BioDAO on @solana 🧬 Uniting patients and patient families to accelerate $CURES and @endrarediseases 🔬 Details below 🧵👇
25
35
176
47,069
CDG Hub retweeted
21 Nov 2022
Latest research summary from #FCDGC:
New research from @FrontierCDG: ✅ Exploring the Role of #NGLY1Deficiency in Patients with NGLY1-#CongenitalDisorderOfDeglycosylation ✅ Report on New Patient with DDOST-#CongenitalDisorderOfGlycosylation Reveals New Insights for Diagnosis and Management rarediseasesnetwork.org/news…

ALT Exploring the Role of NGLY1 Deficiency in Patients with NGLY1-Congenital Disorder of Deglycosylation. Report on New Patient with DDOST-Congenital Disorder of Glycosylation Reveals New Insights for Diagnosis and Management.

2
3
CDG Hub retweeted
An excellent introduction to glycoproteomics. Protein glycosylation is among the most important modifications in biology. We know relatively little about glycobiology, because it is hard to study. This primer describes our best tools nature.com/articles/s43586-0…
3
86
355
CDG Hub retweeted
17 Sep 2022
Free “Essentials” e-textbook to spread knowledge about #glycosylation
Too many researchers are still ignoring glycans in their studies. To help them learn about the importance of glycosylation, all authors, and editors of the “Essential of Glycobiology” are donating their work to make this e-book free for everybody. cshlpress.com/default.tpl?ac…
6
12
9 Sep 2022
If you are a clinician or researcher with expertise in #CDG & would like to be added to our Clinicians & Centres or Researchers pages, contact us!
2
8
9 Sep 2022
Sign up for our monthly newsletter to stay up to date on the newest additions to #cdghub, recent publications on #CDG, upcoming conferences, community events, clinical trials and more!
2
4
9 Sep 2022
New CDG pages are published on #cdghub ! Learn more about disorders of N-linked #glycosylation ALG2-, ALG9-, ALG11-, ALG14- & DPAGT1- CDG here cdghub.com/cdgs/

3
2
CDG Hub retweeted
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 🥰 mdpi.com/1660-4601/19/11/682… @worldCDG @CDG_MDPhD @FrontierCDG @CdgHub @CDGCAREorg
8
13
16 May 2022
Happy CDG Awareness Day! May 16th is World CDG Day & Prof. Jaak Jaeken's bday who discovered CDG in 1980. Let's come together to raise awareness & #StandUnited4CDG ! #WorldCDGDay #CDGHub #raredisease #CDGAwareness
1
10
13 May 2022
CDG and glycobiology terminology can be complex. Check out our integrated glossary to learn key terms as you read or visit the “Glossary” for a complete list of terms to know. #CDGHub #WorldCDGDay #StandUnited4CDG #CDG #glycosylation
1
7
12 May 2022
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 cdghub.com/resources/ #CDGHub #WorldCDGDay #glycosylation
1
3
11 May 2022
Check out our “Clinical Trials” page to stay up to date on current and future CDG studies! Enroll in a study today to help researchers advance knowledge and develop therapies for all CDG types. cdghub.com/clinical-trials/ #CDGHub #WorldCDGDay #glycosylation #CDG
1
1
11 May 2022
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! cdghub.com/researchers/ #CDGHub #WorldCDGDay #CDG
2
4
10 May 2022
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! cdghub.com/cdg-clinicians-ce… #CDGHub #WorldCDGDay #glycosylation
3
5
9 May 2022
Did you know 170 types of CDG have been discovered? CDG Hub has educational pages summarizing the current state of knowledge on 30 CDG types. Visit the “All CDG types” page to learn more! #CDGHub #WorldCDGDay #glycosylation #CDG cdghub.com/cdgs/
2
4
9 May 2022
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
5
14
13 Apr 2022
CDG Hub will be launching this month!
1
3