Association for Glycogen Storage Disease

08/20/2026

🎉 A HUGE MOMENT FOR THE GSD COMMUNITY! 🎉

Ultragenyx has received FDA approval for GENGLYCOS, a prescription gene therapy used along with nutritional management to help reduce the amount of cornstarch taken daily in adults and children 8 years and older with Glycogen Storage Disease Type Ia (GSDIa).

For the GSD community, this moment represents so much more than a drug approval. It represents years of research, clinical trials, advocacy, courage, perseverance, and hope. ❤️

A HUGE thank you to everyone who helped make this happen — the patients, families, caregivers, researchers, doctors, advocates, and everyone who has worked tirelessly to move GSD research forward.

This is an incredible milestone for our community, and there is so much more progress and hope for the future! 🎉

💙 Here’s to a new chapter for the GSD community!

To learn more about GENGLYCOS, visit www.GENGLYCOS.com

08/13/2026

🎒📚 Back-to-School is Here! 📚🎒
We hope your school year is off to a great start! For our GSD families, back-to-school means a little more than new shoes, school supplies, and meeting new teachers. After hospital stays, strict regimens, endless labs, and plenty of cornstarch, getting that backpack packed and heading through those school doors is a BIG deal! 💙
We’re cheering on all of our GSD Rockstars as they take on another school year! ⭐️
📸 Share your back-to-school photos with us! All “grades” are welcome—from preschool to college and beyond. We’d love to feature our GSD Rockstars in the next issue of The Ray!
Here’s to a great school year! 🎉🎒💙

08/02/2026

Hope you're all having a great weekend!
Catch up on two newly released GSD Conference videos now available on our YouTube channel!
🎥 GSD Type XI - Fanconi - Bickel
❤️ GSD Heart Health
Both presentations were recorded during the AGSD Conference this past June in Cleveland, Ohio, and are now available to watch at your convenience.
Be sure to check them out, and feel free to share them with others in the GSD community!

https://www.youtube.com/channel/UC2lyUSUBOqaW9oyLjpbV09A

07/18/2026

Hello everyone!
Yesterday, we released the Ultragenyx Trial Update, and today we're excited to share another presentation from this past AGSD Conference.

The Beam Trial Update is now available to watch on our YouTube channel!
Be sure to check it out, and if you find it helpful, please like, share, and subscribe so you don't miss future updates.

https://youtu.be/IQWcEp58x4s

Beam - 301 UpdateBase Editing in GSD 1aGlycogen Storage Disease

07/17/2026

🎉 Happy Friday!

Be sure to check out our YouTube channel for the latest trial update from , recorded during our 2026 AGSD Conference.

Watch now to catch the latest insights and highlights from the presentation!
https://youtu.be/aIKvZPzjSZo?si=OP0lX4GKRpfjo27G

07/12/2026

Good morning! We have two more presentations from the 2026 AGSD Conference now available on our YouTube channel!
🎥 Bone Health presented by Dr. Andrew Lavik
🎥 A Hepatologist's Perspective on GSD Pathology presented by our keynote speaker, Dr. Radhakrishnan
These educational sessions are packed with valuable information for individuals, families, and healthcare professionals in the GSD community.
Be sure to check them out, and stay tuned—we'll be sharing more conference presentations soon!

https://www.youtube.com/-AGSD/videos

07/12/2026

Now that we're back from the 2026 AGSD Conference, we're excited to begin sharing the conference presentations with you! Over the coming weeks, we'll be posting each session one at a time so everyone has a chance to learn from the outstanding speakers.
We'll kick things off with an excellent presentation on Emergency and Sick Day Management—a topic that every family should have in their toolkit.
Be sure to subscribe to our YouTube channel, where you can watch this presentation along with videos from previous AGSD conferences anytime. We hope you enjoy this year's series!
https://youtu.be/zT0Nq9jkKuI?si=16FTgwkYOc_M4IcO

06/21/2026