CDG CARE

Join us tomorrow for our next 𝐂𝐃𝐆 𝐂𝐨𝐦𝐦𝐮𝐧𝐢𝐭𝐲 𝐂𝐨𝐧𝐧𝐞𝐜𝐭𝐢𝐨𝐧!

We hope everyone had a great holiday weekend! What a perfect time to reconnect and share your wins, woes, and everything in between.

We're back with our community-favorite open forum: "What's on your mind?" - a relaxed, judgment-free hour to talk about whatever's sitting on your heart. 🫸💚🫷

Care routines, therapies, school challenges, sleep (or the no-sleep nights), seizures, equipment, family balance… or just the heavy in-betweens nobody else quite understands.

Come to ask questions. Come to share what's working. Come to just listen with your camera off if that's the kind of day it is.

Who: All CDG families welcome (real-time translated captions available) 🌎
When: Tomorrow, July 7 @ 11AM & 7PM ET
Register here:
𝟏𝟏𝐀𝐌 𝐄𝐓 - https://bit.ly/4xDvRL2
𝟕𝐏𝐌 𝐄𝐓 - https://bit.ly/3Scz3Nq

We hope you'll join us. 💚

🎬 NOW LIVE: Episode TWENTY-ONE - The Final Episode of the 2026 CDG Education & Research Miniseries

After 21 incredible sessions, we are honored to conclude our 2026 CDG Education & Research Miniseries with a topic that is foundational to every rare disease family - our siblings. 💚

In our final episode, Jessica Kruger, LMSW, shares a thoughtful discussion on supporting siblings, strengthening families, and recognizing the unique experiences of brothers and sisters growing up alongside a loved one with CDG.

Sibling relationships last a lifetime. They deserve to be seen, supported, and celebrated as an essential part of the rare disease journey.

🎥 Watch Episode 21: https://youtu.be/E_FlKLPahQw?si=2AV1IoeT8FASTM5Z

This series would not have been possible without the generosity of our extraordinary speakers, sponsors, researchers, clinicians, industry partners, patient advocates, volunteers, and families. Thank you for helping us create a lasting educational resource for the global CDG community.

Together, these 21 sessions explored:

🧬 Gene Therapy & Gene Editing
💊 Drug Repurposing & Therapeutic Development
🔬 Basic Science & Glycobiology
📊 Clinical Trials & Trial Readiness
🧪 Biomarkers & Newborn Screening
🏥 Clinical Care & Disease Management
🤝 Patient-Led Research & Advocacy
🧠 Psychosocial Support & Resilience
👨‍👩‍👧‍👦 Family & Sibling Support
🤖 AI & Emerging Technologies

🌍 All episodes are available on the CDG CARE YouTube channel, with subtitles in 130+ languages, expanding access to trusted education for families, clinicians, and researchers worldwide.

📚 Watch the complete 21-session playlist: https://www.youtube.com/playlist?list=PLImJhPzKgCMo6xuLpZGyHhl2ktMubcNey

Although this series concludes today, our work continues. Together, we are building a stronger, more connected global CDG community - and we are just getting started.

Thank you for learning, sharing, and growing with us. 💚

2026 CDG Miniseries | Supporting Siblings in Rare Disease | Jessica Kruger | Episode TWENTY-ONE 2026 CDG Education & Research Miniseries | Episode TWENTY-ONEIn t...

🎥 NOW LIVE: Episode TWENTY of the 2026 CDG Education & Research Miniseries!

Living with a rare disease affects far more than physical health - it impacts the emotional well-being of patients, caregivers, siblings, and entire families.

In this thoughtful and compassionate presentation, Dr. Canice Crerand discusses the importance of psychosocial support and resilience for families navigating CDG. Drawing from both her professional expertise as a pediatric psychologist and her personal experience as a CDG parent, Dr. Crerand shares practical insights for supporting emotional health, building resilience, and finding strength through connection and community.

💚 A meaningful conversation about one of the most important - and often overlooked - aspects of the rare disease journey.

▶️ Watch Episode TWENTY: https://youtu.be/FcX5LcjWZeY?si=mpdmEKTES_5zDLgh

📚 Explore the growing 2026 CDG Education & Research Miniseries and subscribe to the CDG CARE YouTube channel for new episodes released every week.



This episode offers valuable guidance for families, clinicians, advocates, and anyone seeking to better understand the emotional realities of living with a rare disease. 💚

2026 CDG Miniseries | Psychosocial Support & Resilience in CDG | Dr. Canice Crerand | Episode TWENTY 2026 CDG Education & Research Miniseries | Episode TWENTYIn this ...

🎥 NOW LIVE: Episode NINETEEN of the 2026 CDG Education & Research Miniseries!

Stories have the power to educate, connect, inspire, and create change.

In this meaningful presentation, Karen Morici, CDG CARE's Patient and Community Outreach Coordinator and a devoted CDG parent advocate, shares how storytelling can be one of the most powerful tools in rare disease advocacy.

From connecting newly diagnosed families to inspiring researchers, clinicians, donors, and policymakers, Karen explores how personal stories help build understanding, strengthen communities, and drive progress for individuals and families living with CDG.

💚 Behind every diagnosis is a story - and those stories have the power to change lives.

▶️ Watch Episode NINETEEN: https://youtu.be/N2vOd0h9n6I?si=J3AdremE8RG1TKtl

📚 Explore the growing 2026 CDG Education & Research Miniseries and subscribe to the CDG CARE YouTube channel for new episodes released every week.



This episode is a reminder that science and research move us forward, but it is often the human stories behind them that inspire action and create lasting impact. 💚

2026 CDG Miniseries | The Power of Story | Karen Morici | Episode NINETEEN 2026 CDG Education & Research Miniseries | Episode NINETEENIn thi...