Ultragenyx Patient Advocacy

Rare and UltraRare Disease

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LC-FAOD Community Voices

You Are Not Alone

Long-chain Fatty Acid Oxidation Disorder (LC-FAOD)

“We may be kilometers apart, but I’m walking the same path as you.”

When you live with a rare disorder like an LC-FAOD, it can feel lonely. Check out this video from LC-FAOD community members around the world to hear their experiences and how they manage the condition day to day.

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

Learning more about long-chain fatty acid oxidation disorders, accessing related resources, and finding opportunities to participate in research for LC-FAOD.

Learn More about LC-FAOD

FAODinFocus

Your comprehensive resource for information about LC-FAOD.

Learn More about LC-FAOD on FAODinFocus

LC-FAOD Patient Advocacy Groups*

Learn about organizations from around the world who specialize in advocacy, support, education, and more.

*These organizations are an incomplete listing of rare disease advocacy groups and are not controlled by, endorsed by, or affiliated with Ultragenyx Pharmaceutical Inc. The list is meant for informational purposes only and is not intended to replace your healthcare professional’s medical advice. Ask your doctor or nurse any questions you may have about your disease or treatment plan. If you would like to have your group added to the list, please contact [email protected].

Rare Experiences

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Gabrielle

Angelman syndrome (AS)

“Angelman syndrome (AS) is part of your child, but it does not define who they are.”

Read More about Gabrielle's story

Juliet

Osteogenesis Imperfecta (OI)

“Your life does not stop after a diagnosis”

Read More about Juliet's story

Cynthia

Mucopolysaccharidosis Type VII (MPS VII)

“We would like Cynthia to know that she is not the only one with a rare disease”

Read More about Cynthia's story

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