Association for Glycogen Storage Disease

10/14/2026

💚🦓 GSD Awareness Week is almost here! October 19–25! 🦓💚

As we get closer to GSD Awareness Week, we’ll be sharing a special post and a shareable graphics to help spread awareness about Glycogen Storage Disease (GSD), a rare disease that deserves more recognition, understanding, and support.

Our goal is to raise awareness, bring our community together, and show the world the strength of the GSD community! 💚

📸 Want to show your support? If you’d like a personalized social media frame, send us a direct message with the photo you’d like to use, and we’ll send your framed photo back to you by October 19th!

Let’s come together, spread awareness, and make GSD Awareness Week count! Every share helps spread awareness and reminds GSD families that they are not alone. 💚🦓

09/22/2026

📰 Fresh Off the Press! 📰
The latest issue of The Ray, our AGSD Newsletter, is here! 🎉
This issue is packed with GSD news, updates, and resources, including:
✨ Conference recap
✨ Community news & updates
✨ Current clinical trials & research publications
✨ Updates on new therapies now available - Genglycose for GSD1a
✨ And much more!
📖 Want to stay in the know? Visit our website and head to the “News & Articles” tab to read the latest issue, browse past editions, and find even more updates from the GSD community.
Stay informed. Stay connected. Stay up to date with all things GSD! 💚
https://agsdus.org/wp-content/uploads/2026/09/Newsletter-Fall26.pdf

09/20/2026

Hey everyone! 👋 Have you heard of The Hole in the Wall Gang Camp?
It’s a camp created for children with serious illnesses and their families—a place to have fun, try new activities, make memories, and connect with other families who truly understand. ❤️

This October, the Maryland location is hosting a Family Camp specifically for families affected by metabolic disorders, including Glycogen Storage Disease (GSD)!

📅 October 23–25, 2026
📍 Queenstown, Maryland
The weekend is designed for the whole family and includes a variety of traditional camp activities in a safe, supportive environment. Family Camp is free of charge, including meals and lodging.
If you’re a GSD family, this could be a wonderful opportunity to connect with other metabolic families and experience a little bit of Camp magic! ✨
Check out the Camp’s website for eligibility and more information:
Hole in the Wall Gang Camp – Maryland Family Camps

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

07/12/2026

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

06/21/2026