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.
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.
*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.
