CDG CARE (@CDGCAREorg) header
CDG CARE (@CDGCAREorg) profile picture

CDG CARE

@CDGCAREorg

CDG CARE is a nonprofit organization founded by parents to support families affected by Congenital Disorders of Glycosylation.

cdgcare.org
Joined March 2020
  • Tweets54
  • Following79
  • Followers113
12Media
Photo by CDG CARE (@CDGCAREorg)Photo by CDG CARE (@CDGCAREorg)Photo by CDG CARE (@CDGCAREorg)Photo by CDG CARE (@CDGCAREorg)Photo by CDG CARE (@CDGCAREorg)Photo by CDG CARE (@CDGCAREorg)Photo by CDG CARE (@CDGCAREorg)Photo by CDG CARE (@CDGCAREorg)Photo by CDG CARE (@CDGCAREorg)Photo by CDG CARE (@CDGCAREorg)
Glycomine announced today the first participant dosed in POLAR, our global, randomized, placebo-controlled Phase 2b study of GLM101 for the treatment of #PMM2CDG, a rare genetic disorder of glycosylation. glycomine.com/glycomine-init… #CDGresearch #ClinicalTrial #RareDisease
Image from Glycomine Bio (@GlycomineBio)
1
1
80
Why do CDGs matter? 🧬 📉 Rare and underdiagnosed 🩺 Life-threatening & medically complex 🚫 No approved treatments 😔 Often misdiagnosed as autism, epilepsy, or CP ✨ But there is hope. Learn more & help raise awareness this #WorldCDGDay 💚 #CDGCARE #CDGGoGreen #CDGAwareness
Image from RARE Revolution Magazine® (@RareRevolutionM)
2
2
135
🚨 It’s CDG Takeover Day! 🧬 @CDGCAREorg is taking over Rare Revolution's channels to spotlight Congenital Disorders of Glycosylation (CDGs) — a group of rare, underdiagnosed diseases that deserve attention. Join us today — share, learn, and #GoGreen💚 for #WorldCDGDay!
Image from RARE Revolution Magazine® (@RareRevolutionM)
1
1
106
We’re @CDGCAREorg 💚— a U.S.-based non-profit supporting children, families & researchers impacted by Congenital Disorders of Glycosylation (CDG) since 2014. This Rare Revolution Takeover Day has been made possible by the generous support from Applied Therapeutics. #WorldCDGDay
Image from RARE Revolution Magazine® (@RareRevolutionM)
1
1
174
#CDGAwareness Day. Science in #RareDisease is urgent, personal, and deeply human. In studying Congenital Disorders of Glycosylation (CDG), we decode biology, fight for diagnosis, push treatments forward, and learn from families. Read more: open.substack.com/pub/ivandu…
1
3
207
Here’s how @CDGCAREorg helps: 🔬 Research – We fund gene therapy, drug repurposing & natural history studies 📚 Education – We create trusted resources for families 📢 Advocacy – We push rare disease policy forward 🌍 Community – We build bridges #CDGTakeover #WorldCDGDay
Image from RARE Revolution Magazine® (@RareRevolutionM)
2
1
135
Because glycosylation is so critical, CDGs can lead to complex, multi-system symptoms like: ⚡ Developmental delays 🧠 Seizures ❤️ Heart & liver issues 🦠 Immune dysfunction 👁️ Vision, GI & growth problems #WorldCDGDay #CDGCARE #CDGGoGreen @CDGCAREorg
Image from RARE Revolution Magazine® (@RareRevolutionM)
4
32
531
57,086
Thank you to @RareRevolution for today's powerful #CDGTakeover! 💚 Here’s how to keep the #WorldCDGDay momentum going: 🔍 Learn about CDGs 📢 Raise awareness 🧬 Support research Every voice matters. Join @CDGCAREorg’s mission: cdgcare.org #CDGCARE #CDGAwareness
Image from RARE Revolution Magazine® (@RareRevolutionM)
13
37
687
76,931
¡Únete al movimiento! Este 16 de mayo, el mundo se pinta de verde #CDGGOGREEN @CDGCAREorg
Image from CDG México (@MexicoCdg)
4
6
167
At our new #CZBiohub, experts are uniting under one vision: build a first-of-its-kind imaging tool for understanding the building blocks of life bit.ly/4j0OsII
2
1
7
1,077
Se acerca el día verde 💚 #PaintTheWorldGreen @CDGCAREorg
Image from CDG México (@MexicoCdg)
1
1
40
🤯 Rare Diseases are a $1T+ opportunity 💊 Medicines are within reach 🚶Kiddos are taking their first independent steps 👇 Just watch the before vs after reel for the clinical receipts 🚀 Turn crypto into $CURES moonshots
5
13
6
60
21,000
#RareDisease affects 400M+ people globally, with over half undiagnosed, and the vast majority lacking any approved treatment. Read how patients are accelerating research to pave the way for effective treatments 👇 #RareDiseaseMonth bit.ly/40eMsEO
The key to faster, more impactful research? Put patients in the driver’s seat

The key to faster, more impactful research? Put patients in the driver’s seat

Patient-driven research is critical for improving outcomes in rare diseases. Evidence from 5 years of funding and supporting patient-led organizations shows why. Most major biomedical advances are...

endpoints.news
2
2
9
947
Cell trafficking disorders represent the largest group of complex molecule diseases. However, they are still poorly recognized as a unified diagnostic entity and are often viewed as unrelated individual diseases by non-metabolic specialists. 👉 doi.org/10.1002/jimd.70004
Image from The Journal of Inherited Metabolic Disease (@JIMD_Editors)
9
13
1,435
1 in 10 people on Earth are suffering from a rare disease. We have let the rare disease problem fester for far too long. It’s time to leave this system behind. 🔗 $CURES auction app.bio.xyz/launchpad/Cureto…
3
6
23
2,262
Replying to @CDGCAREorg
@CDGCAREorg
Image from CDG México (@MexicoCdg)
2
1
27
#Microscopy 🔬 is an incredible tool that allows us to visualize the hidden world of biological life. Wesley Legant is pushing the limits of this technology to reveal new insights into the fundamental processes of life 🎥Legant + Lavis Labs
2
1
14
1,265
An international movement is trying to get #WorldCDGDay officially recognised by #WHO 🌍 Will you help us get there?❗️❕ #CDGAwareness 🙏 sign our petition at bit.ly/CDGPetition @CDGCAREorg @CDG_MDPhD @Metab_ERN @FrontierCDG @AmourFund @VJsapps @R_altassan @UK_CDG
9
2
11
CDG CARE retweeted
FCDGC (@FrontierCDG) profile picture
FCDGC@FrontierCDG6 May 2020
#CDG Patients/Families: New educational materials on CDG available at @CDGCAREorg: cdgcare.com/2020/05/05/patie…
Image from FCDGC (@FrontierCDG)
1
6
1
8
Load more