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Participating in virtual or in-person events is a great way to connect with your community, understand the latest research, find resources, and get involved! Check back often for event updates and new happenings!

If you would like to have your event added to the list, please contact [email protected].

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Conditions

Angelman Syndrome (AS)

CDKL5 Deficiency Disorder (CDD)

Creatine Transporter Deficiency (CTD)

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Glycogen Storage Disease Type Ia (GSDIa)

Glycogen Storage Disease Type III (GSDIII)

Long-Chain Fatty Acid Oxidation Disorders (LC-FAOD)

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X-linked Hypophosphatemia (XLH)

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Rare Experiences
- Experiences
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Understanding Drug Development
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- Conditions We Study
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- Our Advocacy Team
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Contact Us

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