Resources

Downloadable Resources

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

Front cover of Mechanism of disease brochure download

Mechanism of disease brochure

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

Front covers of download print pieces

What are LC-FAOD?

Learn more about the different types of LC-FAOD, the metabolic imbalance caused by the disease, and the potential impacts your patients may face

Front cover of long-chain fatty acid oxidation disorder fast facts download

LC-FAOD Fast Facts

A comprehensive overview of LC-FAOD: underlying defects, inheritance, manifestations, diagnosis, guidance on genetic counseling, and patient support*

Front cover of understanding the mechanism of disease in LC-FAOD download

Understanding LC-FAOD

Help your patients and their caregivers learn about the causes, impact, and signs and symptoms of LC-FAOD

Front cover of LC-FAOD Fast Facts for Patients download

LC-FAOD Fast Facts for Patients

An educational booklet for patients and caregivers on the science behind LC-FAOD and the healthcare professionals who may be their team*

Not part of the LC-FAOD Patient Resource Toolkit.

Front cover of long-chain fatty acid oxidation disorder quiz download

LC-FAOD Quiz

This quiz will help your patients monitor LC-FAOD symptoms and identify topics to discuss with you and their LC-FAOD healthcare team

Front cover of LC-FAOD Life transition booklet for infant and children download

LC-FAOD Life Transition Booklet: Infant & Children (ages 0 to 9 years)

Help the caregivers of your infant and early childhood patients learn what to expect with LC-FAOD

Front cover of LC-FAOD Life transition booklet for preteen and teen download

LC-FAOD Life Transition Booklet: Preteen & Teen (ages 10 to 17 years)

Help your preteen and teen patients learn what to expect with LC-FAOD

Front cover of LC-FAOD Life transition booklet for young adult and beyond download

LC-FAOD Life Transition Booklet: Young Adult & Beyond (age 18+ years)

Help your young adult patients learn what to expect with LC-FAOD as they transition to adulthood

Front cover of sponsored LC-FAOD genetic testing overview download

Sponsored genetic testing overview

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

Front cover of sponsored LC-FAOD genetic testing requisition form download

Sponsored genetic testing requisition form

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

Front cover of living well while caring for someone with LC-FAOD graphic

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

Front cover of crafting your long-chain fatty acid oxidation disorder story download

Crafting Your Story

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

Front cover of share your rare LC-FAOD journey download

Share Your Rare Journey

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

Front cover of building your LC-FAOD support network download

Building Your Support Network

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

Front cover of communicating with healthcare providers download

Communicating With Healthcare Providers

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

Front cover of medical history template download

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

*This resource is an independent publication developed by S. Karger Publishers Limited and provided as a service to medicine. Supported by an educational grant from Ultragenyx Pharmaceutical Inc.

RESOURCES FOR SPANISH-SPEAKING PATIENTS AND CAREGIVERS

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

Understand What Causes LC-FAOD and How It Impacts the Body

Graphic for patient video to understand what causes LC-FAOD and how it impacts the body

This video is not included in the LC-FAOD Patient Resource Toolkit.

Front cover of patient download print piece for Understanding LC-FAOD

Understanding LC-FAOD

Help your patients and their caregivers learn about the causes, impact, and signs and symptoms of LC-FAOD

Front cover of patient download print piece for Living well while caring for someone with LC-FAOD

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

Front cover of patient download print piece for Crafting your story

Crafting Your Story

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

Front cover of patient download print piece for Share Your Rare LC-FAOD Journey

Share Your Rare Journey

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

Front cover of patient download print piece for building your LC-FAOD Support Network

Building Your Support Network

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

Front cover of patient download print piece for Communication with Healthcare Providers

Communicating With Healthcare Providers

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

Front cover of patient download print piece for Medical History template

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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