Trusted VLCAD & Rare Disease Advocacy Organizations
Living with VLCAD or another rare disease can feel isolating, but there are many organizations ready to support your journey! Many nonprofit organizations provide education, advocacy, financial resources, and community support for patients and families affected by fatty acid oxidation disorders and other rare conditions. The organizations below are widely respected in the rare disease community and offer reliable information, patient programs, and opportunities to connect with others who understand the journey.
Patient Organizations & Support
FOD Family Support Group
FOD Family Support Group is a worldwide resource that provides support, educate and provide a forum for those whose lives have been touched by a Fatty acid Oxidation Disorder.
Genetic Alliance
Genetic Alliance is a global nonprofit network that empowers patients and families through genetic health education, advocacy, and collaborative research initiatives.
FAOD in Focus
Ultragenyx’s FAOD In Focus provides educational resources to help patients and families understand long-chain fatty acid oxidation disorders (LC-FAOD).
MitoAction
MitoAction improves the quality of life for individuals and families living with mitochondrial disease through support, education, outreach, advocacy, clinical research initiatives.
Global Genes
Global Genes supports and connects the rare disease community by providing advocacy resources, educational programs, and patient leadership initiatives worldwide.
INFORM Network
INFORM brings together global experts working to improve treatments for fatty acid oxidation disorders and patients’ lives.
United Mitochondrial Disease Foundation
The United Mitochondrial Disease Foundation advances research, education, and support services for people affected by mitochondrial disorders.
National Organization for Rare Diseases (NORD)
NORD is a leading rare disease organization providing advocacy, education, and patient support programs.
RARE Foundation
Rare Foundation (previously called EveryLife Foundation for Rare Diseases) accelerates rare disease treatments and improve patient access through policy, research, and engagement.
Sawyers Race for Research
Sawyer's Race For Research is dedicated to funding Trifunctional Protein Deficiency (TFP) research to improve treatments and quality of life and find a cure for this rare genetic metabolic disease
The Assistance Fund
The Assistance Fund (TAF) is an independent nonprofit that provides financial assistance to eligible patients with LC-FAOD to help cover the cost of treatment.
PAN Foundation
PAN’s long-chain fatty acid oxidation disorders (LC-FAODs) medication copay grant helps you afford out-of-pocket costs for covered prescription medications
Mito Foundation
Mito Foundation supports and empowers people affected by mitochondrial disease in Australia. It provides resources and support services for individuals and families while raising awareness and understanding of mito.
Online Support Groups
Living with VLCAD or another fatty acid oxidation disorder can feel overwhelming, but connecting with others who share similar experiences can provide reassurance, practical advice, and a sense of community.
Many families and patients find support through private Facebook groups where members share experiences, ask questions, and offer encouragement while navigating life with FAODs and rare metabolic conditions. Click the links below to request to join these communities and connect with others today.
Note: These groups are typically peer-led communities and are not a substitute for medical advice from your healthcare team.