Resources

Male who typifies a caregiver with a child who typifies a person with LC-FAOD

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 Educational Events from Ultragenyx

Join a live event to hear a clinical expert discuss:

  • Causes and symptoms of LC-FAOD
  • Impacts of LC-FAOD on energy levels and the body
  • Dietary and nutritional considerations
  • Tips on navigating life with LC-FAOD

Events also provide an opportunity to hear personal stories about living with LC-FAOD and a chance to connect with other LC-FAOD patients and caregivers.

LC-FAOD Educational Video Series

Energy in the Balance LC-FAOD video thumbnail

Energy in the Balance

Take a closer look with a clinical expert at the normal energy balance in the body and how LC-FAOD affects the process.

Recognizing Signs and Symptoms of LC-FAOD video thumbnail

Recognizing Signs and Symptoms of LC-FAOD

Watch a clinical expert explain how to recognize the common signs and symptoms of LC-FAOD.

Navigating Life With LC-FAOD video thumbnail

Navigating Life With LC-FAOD

Watch a clinical expert share ways to manage daily living with LC-FAOD and tips on how to build a network to support you as a patient or caregiver.

Working With LC-FAOD Healthcare Providers and Clinics video thumbnail

Working With LC-FAOD Healthcare Providers and Clinics

Learn from a clinical expert how to navigate the healthcare system and prepare for your visits with your metabolic care team.

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 ordered as a printed folder. Most of the Toolkit materials can also be downloaded digitally.

Front covers of download print pieces

LUMI and Friends Children’s Book

Share this educational activity book with your child to help explain LC-FAOD, how it affects the body, and ways to manage it.

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

Understanding LC-FAOD

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

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.

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

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.

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)

Learn what to expect with LC-FAOD during infancy and childhood.

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)

Learn what to expect with LC-FAOD during your teenage years.

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)

Learn what to expect with LC-FAOD during young adulthood and beyond.

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

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.

Front cover of share your rare LC-FAOD journey download

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.

Front cover of building your LC-FAOD support network download

Building Your Support Network

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

Front cover of communicating with healthcare providers download

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.

Front cover of medical history template download

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.

LC-FAOD Self-Assessment Download

LC-FAOD Self-Care Assessment

This assessment will help you monitor your LC-FAOD symptoms and identify topics for you and your LC-FAOD healthcare teams to discuss.

*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:

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.

Find a metabolic clinic

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All Metabolic Clinics included in this finder are cited from the American College of Medical Genetics and Genomics directories website. For more info, you can visit https://clinics.acmg.net/. While the directory is updated regularly, this list may not have the latest provider information. The results shown may not reflect all of the specialists in your area.

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RECURSOS PARA USTED O SU HIJO

Después de reunirse con personas que viven con un LC-FAOD para comprender qué clase de información les resultaría más útil, Ultragenyx preparó un Paquete de recursos para pacientes con LC-FAOD, de manera de guiar a pacientes y familias en esta experiencia que dura una vida.

El paquete contiene recursos valiosos que se pueden comprar en su versión impresa en una carpeta. La mayor parte del contenido del paquete también se puede descargar digitalmente.

Entender qué provoca los LC-FAOD y cómo afecta al cuerpo

Graphic for patient video to understand what causes LC-FAOD and how it impacts the body
Front cover of patient download print piece for Understanding LC-FAOD

Comprender los LC-FAOD

Conozca las causas, el impacto, los signos y los síntomas de los LC-FAOD.

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

Vivir bien mientras cuida a alguien con LC-FAOD

Cuidar a otra persona puede ser abrumador, estresante y desconcertante. Es importante recordar que puede atender mejor a otras personas si cuida de usted.

Front cover of patient download print piece for Crafting your story

Elaboración de su historia

A veces, es difícil describir la experiencia con un LC-FAOD. Esta guía le muestra cómo escribir y compartir su historia con otras personas.

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

Comparta su recorrido poco frecuente

Compartir la experiencia personal puede ayudar a informar a las personas sobre los LC-FAOD y a crear una conexión emocional con otras personas que no estén familiarizadas con el trastorno.

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

Construya su red de apoyo

Averigüe como comunicarse con organizaciones que comprenden su experiencia y retos.

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

Comunicación con los proveedores de atención médica

Es posible que los pacientes con LC-FAOD necesiten consultar a varios profesionales de la salud. Esta guía ofrece consejos para darle a su equipo médico información útil y coherente.

Front cover of patient download print piece for Medical History template

Antecedentes médicos

Mantener una historia clínica actualizada y entregar copias al equipo médico puede ayudarlo a aprovechar al máximo las visitas al consultorio.

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