Resources and Tools to Support You and Your Family
As a result of meeting with people living with LC-FAOD to understand what types of education would be the most helpful, Ultragenyx developed an LC-FAOD Patient Resource Toolkit to guide patients and families on this lifelong journey.
The Toolkit includes valuable resources that can be downloaded digitally.
Learn about the causes, impact, and signs and symptoms of LC-FAOD.
LC-FAOD Fast Facts for Patients
Read about the science behind LC-FAOD and different disease facts as you begin your journey with LC-FAOD.*
Not part of the LC-FAOD Patient Resource Toolkit.
An overview of what you can expect to learn in the following documents about the long-chain fatty acid oxidation disorders.
Living Well While Caring for Someone With LC-FAOD
Caregiving may feel overwhelming, stressful, and unsettling. It’s important to remember that you can provide better care if you take care of yourself.
LC-FAOD Life Transition Booklet: Infant & Children (ages 0 to 9 years)
Learn what to expect with LC-FAOD during infancy and childhood.
LC-FAOD Life Transition Booklet: Preteen & Teen (ages 10 to 17 years)
Learn what to expect with LC-FAOD during your teenage years.
LC-FAOD Life Transition Booklet: Young Adult & Beyond (age 18+ years)
Learn what to expect with LC-FAOD during young adulthood and beyond.
Crafting Your Story
Sometimes the experience of LC-FAOD is hard to describe. This guide shows how to craft and share your story with others.
Share Your Rare Journey
Sharing your personal experience can help educate people about LC-FAOD and make an emotional connection with others who are unfamiliar with the disorder.
Building Your Support Network
Learn how to connect with organizations that understand your experience and challenges.
Communicating With Healthcare Providers
Patients with LC-FAOD may need to see multiple healthcare providers. This guide provides tips on how to provide your healthcare team with consistent, useful information.
Keeping an up-to-date medical history and providing copies to your healthcare team can help you make the most of office visits.
*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.
The Disease Is Rare, but You Are Not Alone
Many people living with or caring for a person with LC-FAOD find it useful to connect with organizations and people who share similar experiences and challenges and can offer support.
Here are links to some informative support and advocacy organizations:
International Network for Fatty Acid Oxidation Research and Management (INFORM)
FAOD disease-specific research and education
Canadian Organization for Rare Disorders
Rare disease public policy advocacy, education, and research
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.