CDG CARE
@CDGCAREorg
Followers
101
Following
9
Media
7
Statuses
45
CDG CARE is a nonprofit organization founded by parents to support families affected by Congenital Disorders of Glycosylation.
Joined March 2020
We’re thrilled to announce that CDG CARE is now an official member of COMBINEDBrain - The Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders! 💚🧠. This powerful alliance of rare disease professionals, scientists, and advocacy organizations is devoted.
0
0
0
New Documentary Spotlight 🎥. Could the tiny fruit fly help unlock treatments for rare diseases? 🪰🔬. We're excited to share a powerful new documentary featuring the incredible work of Dr. Clement Chow and the Chow Lab, alongside the Link Lab, showcasing how Drosophila are being.
0
1
1
📢Families with rare diseases often rely on Medicaid as their primary or secondary insurance provider. Last week, the House passed legislation that puts Medicaid as we know it and rely on it at risk. Over 8 million families are at risk of losing their Medicaid. But there is
0
0
1
𝑪𝑫𝑮 𝑹𝑬𝑺𝑬𝑨𝑹𝑪𝑯 𝑼𝑷𝑫𝑨𝑻𝑬: New CDG Type Identified & Your Help Needed!. Hereditary Fructose Intolerance (HFI) has officially been classified as a new type of CDG, highlighting shared glycosylation defects and opening new doors for research, diagnosis, and family
0
0
1
Hope in Action: The ALG13-CDG Research Project Begins! . CDG CARE is proud to announce the kickoff of a groundbreaking new research initiative in partnership with Perlara and the extraordinary ALG13-CDG community, led by the Hale family and their 10-year-old daughter, Siena.
0
1
2
🚨URGENT ACTION NEEDED .The NIH issued a special NOFO a few weeks ago that was framed to open the door for the FCDGC to REAPPLY for our 5-year federal funding support - thanks to YOUR advocacy. BUT… there is now a serious roadblock delaying the release of this opportunity!. We.
0
1
1
🎉 Representing our CDG Community at the CZI Science in Society conference in Las Vegas! . Honored to be welcomed as a RAO Cycle 3 grantee and excited to collaborate with some of the brightest minds in the rare disease space. 💡 . Dr. Kristen Skvorak and Andrea Miller are present
0
0
1
RT @RareRevolutionM: Why do CDGs matter? 🧬.📉 Rare and underdiagnosed .🩺 Life-threatening & medically complex .🚫 No approved treatments .😔 O….
0
2
0
RT @RareRevolutionM: 🚨 It’s CDG Takeover Day! 🧬 @CDGCAREorg is taking over Rare Revolution's channels to spotlight Congenital Disorders of….
0
1
0
RT @RareRevolutionM: We’re @CDGCAREorg 💚— a U.S.-based non-profit supporting children, families & researchers impacted by Congenital Disord….
0
1
0
RT @dunckerUAEM: #CDGAwareness Day. Science in #RareDisease is urgent, personal, and deeply human. In studying Congenital Disorders of Glyc….
0
1
0
RT @RareRevolutionM: Here’s how @CDGCAREorg helps: .🔬 Research – We fund gene therapy, drug repurposing & natural history studies .📚 Educat….
0
2
0
RT @RareRevolutionM: Because glycosylation is so critical, CDGs can lead to complex, multi-system symptoms like: .⚡ Developmental delays .🧠….
0
39
0
RT @RareRevolutionM: Thank you to @RareRevolution for today's powerful #CDGTakeover! 💚.Here’s how to keep the #WorldCDGDay momentum going:….
0
45
0
Curiosity drives discovery. but without funding, the future of science hangs in the balance. This Radiolab episode is a powerful reminder of what's at stake.
radiolab.org
How a tiny worm that loves hot water changed the trajectory of modern science.
0
0
0
🌍 Today is Undiagnosed Day, a reminder that for many rare disease families, the search for answers can take years, even decades. In this thoughtful piece, @dunckerUAEM shares the systemic barriers, emotional toll, and scientific breakthroughs shaping the diagnostic journey. .
0
0
0
Thoughts on Working in Adverse Climates: Building and Rebuilding Together
0
0
0
RT @MexicoCdg: ¡Únete al movimiento! Este 16 de mayo, el mundo se pinta de verde #CDGGOGREEN @CDGCAREorg
0
4
0
RT @ChanZuckerberg: At our new #CZBiohub, experts are uniting under one vision: build a first-of-its-kind imaging tool for understanding th….
axios.com
Next-generation imaging tools could give researchers a better understanding of the processes that govern cells, especially when they go awry due to disease.
0
2
0
A message from our sponsored podcast: Glycocast has been an incredible journey—bringing together families, science, and medicine in one comprehensive and meaningful conversation. We’ve explored stories, breakthroughs, and challenges, always grounded in the shared goal of
0
0
2