Resources

Become a Knowledgeable Patient or Caregiver

Living with long-chain fatty acid disorders (LC-FAOD) comes with unique challenges. Staying informed will help enable you to anticipate and meet those challenges.

LC-FAOD Patient Education Events

These events offer patients and their caregivers the opportunity to:

  • Learn more about LC-FAOD
  • Hear an LC-FAOD healthcare specialist discuss a new topic each month. Topics may include:
    • Causes and symptoms of LC-FAOD
    • Dietary and nutritional considerations
    • Tips for daily living
  • Listen to LC-FAOD patients and caregivers share their personal stories
  • Connect with other LC-FAOD patient and caregiver attendees

Help in Navigating Care

A set of useful materials are available for download. Many of these resources were developed with input from families living with LC-FAOD.

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Understanding LC-FAOD

Learn about the causes, impact, and signs and symptoms of LC-FAOD.

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Building Your Support Network

Learn how to connect with organizations that understand your experience and challenges.

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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.

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Medical History

Keeping an up-to-date medical history and providing copies to your healthcare team can help you make the most of office visits.

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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.

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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.

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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.

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:

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.

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