CDG UK

🎙️ 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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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 @UK_CDG here... justgiving.com/page/benclark0…

📣 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