📣 We’re taking over @RareRevolutionMag today! We are CDG UK, and we're here to raise awareness for Congenital Disorders of Glycosylation (CDG) — a group of rare, inherited metabolic diseases that affect nearly every system in the body. 🧬 #CDGUK #CDGAwarenessDay @cdguk

🟢 Did you know? There are ~1800 known cases of CDG worldwide — but the real number may be much higher due to: 🔍 Misdiagnosis ⚠️ Limited access to testing 📉 Gaps in research #ThinkCDG #RareDisease @cdguk

🗓️ May 16th was International CDG Awareness Day — a global moment for our community to unite, educate, and advocate. Today, we’re asking our fellow #RareDisease families around the world: 👉 Stand with us 👉 Share our message 👉 Help us be seen #TurningTheTide4RAREDisease @cdguk

We are CDG UK: 💚 Supporting families 🔬 Funding research 📣 Raising awareness 🧑‍⚕️ Educating professionals Let’s ensure no one faces CDG alone. 🔗 Learn more: cdg.uk #PatientVoice #CDGwarriors @cdguk

💚 Every child deserves: 🔍 A diagnosis 🩺 The right care 🌟 A brighter future 📢 Help us reach more families and professionals. 👉 Visit: ow.ly/MWQe50VTIQj 🔁 Like, comment & share! #CDGAwarenessDay #CDGwarriors #CommunitySupport @cdguk

We are CDG UK — a small, passionate charity founded by parents of children with CDG 💚 We’re on a mission to bring hope, answers, and support to families facing this ultra-rare condition. #CDGUK #ThinkCDG #RareDiseaseCharity @cdguk

Our work is driven by four core goals: ✔️ Support families through diagnosis & beyond ✔️ Raise awareness of CDG ✔️ Fund vital research ✔️ Educate healthcare professionals to spot the signs earlier #PatientVoice #TurningTheTide4RAREDisease @cdguk

We are CDG UK — a parent-led charity supporting families affected by Congenital Disorders of Glycosylation (CDG) 💚 These ultra-rare metabolic conditions impact nearly every system in the body. #CDGUK #ThinkCDG #RareDiseaseCharity @cdguk

Here’s what we do ⬇️ ✔️ Support families through diagnosis & beyond ✔️ Raise awareness for CDG ✔️ Fund research into treatments & potential cures ✔️ Educate healthcare professionals for earlier detection #CDGAwarenessDay #PatientLed @cdguk

💬 We believe: Every child deserves 🧬 A diagnosis 🩺 Proper care 🌟 And a future filled with hope 📢 Help us spread the word. 👉 Learn more: cdg-uk.org #CDGwarriors #PatientVoice #CommunitySupport #TurningTheTide4RAREDisease @cdguk

@cdguk in the Press! The Times featured one of our incredible PMM2-CDG family, shining a spotlight on their life with this ultra-rare condition. 💚 📖 Every story shared brings us closer to awareness, understanding, and change. 🔗 Read here: thetimes.com/life-style/par…

📣 Time to meet the heroes behind the headlines — our CDG warriors! Today, we’re sharing the real faces and stories of our CDG community. 💚 #CDGWarriors #ThinkCDG @cdguk

These are our children, our families, our everyday heroes. Each photo tells a story — of love, strength, and life with a rare disease. @cdguk

Follow along today as we celebrate the courage and resilience of those who inspire our work every single day. #FacesOfCDG #CDGUK #RareDiseaseFamilies #PatientVoice @cdguk

🐧 Meet Rafa — a cheeky & headstrong 2.5-year-old diagnosed with PMM2-CDG at age one, after missing developmental milestones. He’s spent half his life in Uganda and half in the UK — bringing smiles everywhere he goes! #CDGUK #PMM2CDG #ThinkCDG #RareDisease @cdguk

Rafa’s challenges include: 💬 Speech delays (but now says “yes” and “no” passionately!) 🦴 Gross motor delay & hypotonia 👀 Bilateral squint ⚡ Febrile seizures (managed on meds) @cdguk #PMM2CDG #ThinkCDG #RareDisease

He loves playing tricks on his parents and spending time with friends & family. He’s our brave little warrior, and one day we hope he’ll meet #PenelopeThePenguin, CDG UK's beloved mascot! 🐧💚 #CDGUK #PMM2CDG #ThinkCDG #RareDisease #CDGWarrior #RafaTheWarrior @cdguk

Three Peaks Challenge completed in 23 hours, 30 minutes, despite rain and gale force winds on all three stages. Really proud of these lads! You can still donate to CDG UK here... justgiving.com/page/benclark0…

🎙️ New JIMD Podcast! Eva Morava & Irena Muffels are back to ask a massive question: How do we treat all the CDGs? Organoids, AI, basket trials & the three pillars shaping the therapeutic future of congenital disorders of glycosylation. Listen now: open.spotify.com/episode/2OkL0T… #CDG

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