CDG CARE

06/19/2026

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

This episode offers a truly unique perspective from Jonathan Hayden Hoffman, MS, who shares his experience as both an individual living with PGM1-CDG and as a researcher and advocate working to advance rare disease research.

Through his personal journey, Jonathan highlights the importance of patient voices in research, the value of lived experience, and the powerful role that individuals and families can play in driving progress for the rare disease community.

💚 A meaningful reminder that some of the most impactful insights come from those living the journey every day.

▶️ Watch Episode FIFTEEN: https://youtu.be/WvlvFA8K5gs?si=LCigYJsGBW009X_B

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

2026 CDG Education & Research Miniseries | Episode FIFTEENIn this...

06/17/2026

Join our next 𝐂𝐃𝐆 𝐂𝐨𝐦𝐦𝐮𝐧𝐢𝐭𝐲 𝐂𝐨𝐧𝐧𝐞𝐜𝐭𝐢𝐨𝐧! 💚

Some days you don't need answers - you just need people who get it.

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: 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. 💚

06/16/2026

🎬✨ Episode FOURTEEN is now LIVE! 💚

This week in the CDG CARE 2026 Education & Research Miniseries, we are pleased to feature:

🧬 Dr. Miao He
Co-Director, The Metabolic and Advanced Diagnostic Laboratory
Children's Hospital of Philadelphia (CHOP)

Presenting:

🚀 "CDG Biomarkers and Newborn Screening"

How can earlier diagnosis improve outcomes for individuals living with CDG?

In this important presentation, Dr. He explores the growing role of biomarkers and newborn screening in advancing diagnosis, research, and future therapeutic development for Congenital Disorders of Glycosylation.

From laboratory discoveries to public health initiatives, this session highlights how emerging diagnostic tools may help identify CDG earlier and support improved care and treatment opportunities in the future.

Whether you are a family member, clinician, researcher, advocate, or industry partner, this is a fascinating look at one of the most important areas of growth in rare disease medicine.

📺 Watch Episode FOURTEEN here: https://youtu.be/4ZoWWHk8kOA?si=9diMt8BYzX4VkI7-

💚 New episodes are released every week! Follow the CDG CARE page and subscribe to our YouTube Channel so you never miss an episode.

2026 CDG Miniseries | Episode FOURTEENFrom the 2026 CDG Scientifi...

06/14/2026

🎬✨ Episode THIRTEEN is now LIVE! 💚

This week in the CDG CARE 2026 Education & Research Miniseries, we are honored to feature one of the pioneers of CDG research:

🧬 Dr. Hudson Freeze
Director, Human Genetics Program
Director, Sanford Children's Health Research Center

Presenting:

🚀 "Future of CDG Research: Challenges and Opportunities at the Edge of Glycobiology"

Where is CDG research headed next?

In this thought-provoking and inspiring presentation, Dr. Freeze reflects on decades of progress in the field while exploring the scientific challenges, emerging opportunities, and therapeutic advances that may shape the future of CDG research.

From glycobiology and genetics to clinical trials and treatment development, this session provides a fascinating look at the expanding CDG research ecosystem and the work still ahead.

Whether you are a family member, clinician, researcher, advocate, or industry partner, this is a must-watch presentation from one of the most influential leaders in the CDG community.

📺 Watch Episode THIRTEEN here: https://youtu.be/RpnE8ts4qEw

💚 New episodes are released every week! Follow the CDG CARE page and subscribe to our YouTube Channel so you never miss an episode.

2026 CDG Miniseries | Episode THIRTEENFrom the 2026 CDG Scientifi...

06/12/2026

Episode TWELVE is now LIVE!

Join Dr. Rolf Stottmann as he explores PIGA genetics and the future potential of gene replacement therapy in this exciting new episode of the CDG CARE 2026 Education & Research Miniseries.

🧬 Learn how genetic discoveries are helping researchers move closer to targeted therapies for PIGA-related disorders and other rare genetic diseases.

📺 Watch now: https://youtu.be/_o9iLuJoYcg?si=evdg3DovcIKB2CkG

💚 Follow the CDG CARE page and subscribe to our YouTube Channel to stay up to date as new episodes are released each week.

2026 CDG Miniseries | Episode TWELVEFrom the 2026 CDG Scientific ...

06/10/2026

🎬✨ Episode ELEVEN is now LIVE! 💚

This week in the CDG CARE 2026 Education & Research Miniseries, we are excited to feature:

🧬 Dr. Kent Lai
Professor of Pediatrics, Nutrition and Integrative Physiology
University of Utah Spencer Fox Eccles School of Medicine

Presenting:

🚀 "Advancing Gene Therapy for CDG: Lessons from Cell and Animal Models of PGM1-CDG and PMM2-CDG"

Gene therapy continues to be one of the most promising areas of therapeutic development for rare genetic diseases.

In this informative session, Dr. Lai shares lessons learned from years of research using cell and animal models of PGM1-CDG and PMM2-CDG, offering valuable insight into how scientists are building the foundation for future gene therapy approaches.

From understanding disease biology to evaluating potential treatment strategies, this presentation provides an excellent look at the work happening behind the scenes to move promising therapies closer to patients.

Whether you are a family member, researcher, clinician, or advocate, this is a fascinating discussion on one of the most exciting areas of CDG research.

📺 Watch Episode ELEVEN here: https://youtu.be/BxxSkGO9Wp4?si=vStCTS6ocXgYMY-Y

💚 New episodes are released every week! Follow the CDG CARE page and subscribe to our YouTube Channel so you never miss an episode.

2026 CDG Miniseries | Episode ELEVENFrom the 2026 CDG Scientific ...

06/08/2026

🎬✨ Episode TEN is now LIVE! 💚

This week in the CDG CARE 2026 Education & Research Miniseries, we are honored to feature one of the leading voices in genetic medicine and rare disease therapeutics:

🧬 Dr. Rebecca Ahrens-Nicklas
Associate Chief for Research, Division of Human Genetics, and Director of the Gene Therapy for Inherited Metabolic Disorders Frontier Program at Children's Hospital of Philadelphia (CHOP)

Presenting:

🚀 "Gene Editing in Rare Diseases: How Close Are We to Clinical Impact"

Gene editing has captured the attention and imagination of the rare disease community - but how close are we really to seeing these technologies impact patients?

In this engaging and informative session, Dr. Ahrens-Nicklas explores the promise, challenges, and current reality of gene editing, offering valuable insight into where the field stands today and where it may be headed tomorrow.

Recently recognized among TIME Magazine's 100 Most Influential People of 2026, Dr. Ahrens-Nicklas and her team are helping shape the future of precision medicine and rare disease therapeutics.

Whether you are a family member, clinician, researcher, or advocate, this is a must-watch presentation for anyone interested in the future of rare disease treatment.

📺 Watch Episode TEN here: https://youtu.be/XWKCZgEHu_Q?si=wBldtODb8kTDb4TO

💚 New episodes are released every week! Follow the CDG CARE page and subscribe to our YouTube Channel so you never miss an episode.

2026 CDG Miniseries | Episode TENFrom the 2026 CDG Scientific & F...

06/07/2026

🎬✨ Episode NINE is now LIVE! 💚

This week in the CDG CARE 2026 Education & Research Miniseries, we are proud to feature Dr. Ethan Perlstein, Founder and CEO of Perlara, presenting:

🚀 "The Future of Drug Repurposing: Vision, Disruption, and What Must Change"

What will it take to accelerate treatment discovery for rare diseases?

In this compelling session, Dr. Perlstein challenges traditional approaches to therapeutic development and shares a bold vision for how patient communities, researchers, industry partners, and emerging technologies can work together to move faster toward treatments.

This presentation is particularly relevant for families, advocates, researchers, and anyone interested in the future of rare disease innovation.

📺 Watch Episode NINE here: https://youtu.be/D5UIkJ7opd8?si=CoLSMcXezibTG3kY

💚 New episodes are released every week. Be sure to follow the CDG CARE page and subscribe to our YouTube Channel so you never miss an episode!

2026 CDG Miniseries | Episode NINEFrom the 2026 CDG Scientific & ...

06/06/2026

🎂 Happy Birthday, June stars! 🎉
You shine as bright as the long summer days
Wishing you warmth, laughter, and love
And a year full of sunshine in so many ways. 🌞

Also celebrating in June:
Milan, PMM2-CDG 🇳🇱
Olivia, ALG6-CDG 🇬🇧
Seyed 🇺🇸
William, PMM2-CDG 🇬🇧
Amaan, SRD5A3-CDG 🇺🇸
Eden, PIGA-CDG 🇬🇭
Marcy, SLC35C1-CDG 🇺🇸
Durr, NGLY1-CDG 🇪🇬
Pietro, DPM1-CDG 🇧🇷
Emma, PMM2-CDG 🇺🇸
Juliet, ALG1-CDG 🇺🇸
Lennon, PIGW-CDG 🇺🇸
Emily, PIGV-CDG 🇺🇸
Benno, NGLY1-CDG 🇩🇪
Israel 🇺🇸
Silas 🇺🇸
Егор, PMM2-CDG 🇷🇺
Barbara, PMM2-CDG 🇧🇷
Case, NUS1-CDG 🇺🇸
Leonardo, PMM2-CDG 🇮🇪
Nicholas, PIGN-CDG 🇺🇸
Kya, ALG6-CDG 🇺🇸
Ashton, PMM2-CDG 🇦🇺
Cira, DPM1-CDG 🇪🇸
Samuel, PIGV-CDG 🇦🇺
Elias, PIGA-CDG 🇩🇪
Fletcher, SSR4-CDG 🇦🇺
Natali, PMM2-CDG 🇺🇸
Ellie, ALG11-CDG 🇺🇸
Allison, CsGalNAcT1-CDG 🇺🇸
Ashton, PIGA-CDG 🇺🇸
Ben, NGLY1 🇬🇧
Isaque, ALG13-CDG 🇧🇷
McKenzie, PMM2-CDG 🇺🇸
Tyler, PMM2-CDG 🇺🇸
Callie, SLC35A2-CDG 🇬🇧
Lottie, PMM2-CDG 🇳🇿
Xavier, PMM2-CDG 🇬🇧