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CDG CARE Profile
CDG CARE

@CDGCAREorg

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

Joined March 2020
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@CDGCAREorg
CDG CARE
29 days
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.
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@CDGCAREorg
CDG CARE
1 month
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.
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@CDGCAREorg
CDG CARE
2 months
📢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
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@CDGCAREorg
CDG CARE
2 months
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
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@CDGCAREorg
CDG CARE
2 months
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.
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@CDGCAREorg
CDG CARE
2 months
🚨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.
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@CDGCAREorg
CDG CARE
2 months
🎉 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
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@CDGCAREorg
CDG CARE
2 months
RT @RareRevolutionM: Why do CDGs matter? 🧬.📉 Rare and underdiagnosed .🩺 Life-threatening & medically complex .🚫 No approved treatments .😔 O….
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@CDGCAREorg
CDG CARE
2 months
RT @RareRevolutionM: 🚨 It’s CDG Takeover Day! 🧬 @CDGCAREorg is taking over Rare Revolution's channels to spotlight Congenital Disorders of….
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@CDGCAREorg
CDG CARE
2 months
RT @RareRevolutionM: We’re @CDGCAREorg 💚— a U.S.-based non-profit supporting children, families & researchers impacted by Congenital Disord….
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@CDGCAREorg
CDG CARE
2 months
RT @dunckerUAEM: #CDGAwareness Day. Science in #RareDisease is urgent, personal, and deeply human. In studying Congenital Disorders of Glyc….
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@CDGCAREorg
CDG CARE
2 months
RT @RareRevolutionM: Here’s how @CDGCAREorg helps: .🔬 Research – We fund gene therapy, drug repurposing & natural history studies .📚 Educat….
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@CDGCAREorg
CDG CARE
2 months
RT @RareRevolutionM: Because glycosylation is so critical, CDGs can lead to complex, multi-system symptoms like: .⚡ Developmental delays .🧠….
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@CDGCAREorg
CDG CARE
2 months
RT @RareRevolutionM: Thank you to @RareRevolution for today's powerful #CDGTakeover! 💚.Here’s how to keep the #WorldCDGDay momentum going:….
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@CDGCAREorg
CDG CARE
3 months
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.
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radiolab.org
How a tiny worm that loves hot water changed the trajectory of modern science.
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@CDGCAREorg
CDG CARE
3 months
🌍 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. .
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@CDGCAREorg
CDG CARE
3 months
Thoughts on Working in Adverse Climates: Building and Rebuilding Together
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@CDGCAREorg
CDG CARE
3 months
RT @MexicoCdg: ¡Únete al movimiento! Este 16 de mayo, el mundo se pinta de verde #CDGGOGREEN @CDGCAREorg
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@CDGCAREorg
CDG CARE
3 months
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.
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@CDGCAREorg
CDG CARE
3 months
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
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