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/podcast/the-ag…

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 CDG CARE

Thank you to Rare Man 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 CDG CARE’s mission: cdgcare.org #CDGCARE #CDGAwareness

🚨 It’s CDG Takeover Day! 🧬 CDG CARE 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!

We’re CDG CARE 💚— 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

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

#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/ivanduncke…

Here’s how CDG CARE 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

🎉 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

🚨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

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.

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

📢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

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

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

𝑩𝒆𝒄𝒂𝒖𝒔𝒆 𝒘𝒉𝒂𝒕 𝒘𝒆 𝒍𝒆𝒂𝒓𝒏 𝒊𝒏 𝒐𝒏𝒆 𝑪𝑫𝑮 𝒄𝒂𝒏 𝒄𝒉𝒂𝒏𝒈𝒆 𝒍𝒊𝒗𝒆𝒔 𝒊𝒏 𝒕𝒉𝒆𝒎 𝒂𝒍𝒍... NIH Awards $5.4 Million to Multi-Institutional Consortium to Investigate Neurological Symptoms in CDG We are thrilled to share that a consortium of five research

CDG CARE made the news! We’re honored to be featured in the brand new Global Genes Guide to Securing a State Proclamation for Rare Disease Awareness, a resource we’ve been proud to help develop. This guide is designed to help rare disease patient groups everywhere launch

𝐏𝐚𝐭𝐡𝐰𝐚𝐲𝐬 𝐭𝐨 𝐂𝐃𝐆 𝐩𝐫𝐨𝐠𝐫𝐞𝐬𝐬 𝐬𝐭𝐚𝐫𝐭𝐬 𝐡𝐞𝐫𝐞! Join us where science, solutions, and lived experience intersect. 𝗥𝗲𝗴𝗶𝘀𝘁𝗲𝗿 𝗳𝗼𝗿 𝘁𝗵𝗲 𝟮𝟬𝟮𝟲 𝗖𝗗𝗚 𝗦𝗰𝗶𝗲𝗻𝘁𝗶𝗳𝗶𝗰 & 𝗙𝗮𝗺𝗶𝗹𝘆 𝗖𝗼𝗻𝗳𝗲𝗿𝗲𝗻𝗰𝗲 𝗻𝗼𝘄! 𝗔𝗽𝗿𝗶𝗹 𝟮𝟰–𝟮𝟲, 𝟮𝟬𝟮𝟲 |

Now streaming!!! GlycoCAST Episode 9: Unlocking Shared Pathways and Therapies for Multiple CDGs Dr. Tamas Kozicz and Dr. Irena Muffels (Icahn School of Medicine at Mount Sinai) discuss how advanced multi-omics is helping unravel the complexity of Congenital Disorders of

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