Together we can make a difference for GSD care.

Did you know that your or your child’s unique medical history could have a positive impact on the future of care for the GSD community? To help deepen what researchers know about GSD and get free access to your complete medical records via your PicnicHealth timeline, sign up for GSD Odyssey.

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Study Eligibility: You can enroll in this study if you or your child have been diagnosed with GSDIa or GSDIII and have received medical care in the U.S. in the past 7 years.

About the Study

Ultragenyx and PicnicHealth are partnering to conduct innovative research that aims to better understand how GSD (Glycogen Storage Disease) affects real people like you. Non-clinical natural history studies, such as the GSD Odyssey, provide important information for researchers that can help:

Inform doctors how to provide better care for their patients
Answer critical questions about GSDIa and GSDIII for the community
Expand access to treatment options

If you would like to help, enroll online in the GSD Odyssey study to provide anonymous medical record data and help change the future of care for GSD!

For Spanish, click here (para español, haga clic aquí).

You can join if you’ve been diagnosed with GSDIa or GSDIII.

How it Works

If you've been diagnosed with GSDIa or GSDIII and receive care in the US, it takes just a few minutes to sign up.

No commitment - you're free to opt out at any time and your data will not be included in future studies.


Gather health history

With your ok, we contact your care providers to collect your health history —imaging files, test results, and doctors' notes.


Anonymize your data

Our rigorous multi-step process wipes clean all identifying information. See our Privacy Pledge.


Compile for research

We combine your anonymous health data with others to create an invaluable dataset — only for researchers.


Receive the benefits

You'll get a copy of your fully digitized medical records, and updates on future research findings.

Privacy and Security

At PicnicHealth, we’re patients too, so we know how important it is that your private data stays private. Here’s our promise:

HIPAA compliant

We protect your information by using end- to-end encryption and abiding by HIPAA compliant practices - the same privacy and security practices that your doctor uses.

Military grade encryption

We use the highest security standards available, 256-bit encryption.

HITRUST certified

We continuously pass the most trusted healthcare security reviews.

3rd party ethics review

PicnicHealth uses an IRB (Institutional Review Board) to protect and act in the best interest of our volunteers.

Share your history to help change the history of GSD

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Have questions about how it works or PicnicHealth?
Email us at [email protected].