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 Educational Events from Ultragenyx

These events offer patients and their caregivers the opportunity to:

  • 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 personal stories from LC-FAOD patients and caregivers
  • Connect with other LC-FAOD patient and caregiver attendees

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.

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Understanding LC-FAOD

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

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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.

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

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

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

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

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

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

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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.

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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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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.

*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.

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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

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Comprender los LC-FAOD

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

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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.

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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.

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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.

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Construya su red de apoyo

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

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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.

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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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