Resources

Downloadable Resources

Resources that may provide additional insight and support for patients, parents, and caregivers

Sponsored genetic testing overview

Learn about a program providing no-charge testing for eligible patients suspected to have an LC-FAOD

Sponsored genetic testing requisition form

Download a printable test requisition form to order sponsored LC-FAOD genetic testing for eligible patients

Mechanism of disease brochure

Long-chain fatty acid oxidation disorder mechanism of disease content in print form

Building Your Support Network

Help patients and caregivers connect with organizations that understand their experiences and challenges

Communicating With Health Care Providers

Advice and tips on how patients and caregivers can create a better partnership with their healthcare team

Living Well While Caring for Someone With LC-FAOD

Information on how to prepare caregivers of a child with LC-FAOD and access the help and support they need

Share Your Rare Journey

Advice on how and where patients and caregivers can share their experience to create better understanding of LC-FAOD

Crafting Your Story

Guidance for patients and caregivers as they think about how to tell their LC-FAOD story

Medical History

A template that patients and caregivers can use to record their LC-FAOD stories, list important contact information, and note symptoms and medications

Relevant Websites

Links to informative advocacy and support resources

*This nutrition guideline is specific to the very long–chain acyl-CoA dehydrogenase deficiency (VLCAD) form of LC-FAOD. Please follow up with your patient with LC-FAOD to determine if these guidelines are appropriate for them.

Patient ADVOCACY AT ULTRAGENYX

At Ultragenyx, the patient advocacy team is passionate about educating and supporting patients, families, and caregivers affected by rare and ultrarare diseases. Find valuable resources, hear from others who live with rare diseases, and learn more about our commitment to the rare disease patient community.

UNMET NEEDS IN LC-FAOD

There remains an unmet clinical need in LC-FAOD. Many patients experience lifestyle limitations, as well as significant morbidities and life-threatening complications.

Reference

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