VLCAD Awareness Days

Raising awareness about Very Long-Chain Acyl-CoA Dehydrogenase (VLCAD) deficiency helps improve early diagnosis, support families, and advance research for fatty acid oxidation disorders (FAODs). Several important awareness days and months throughout the year highlight rare diseases, metabolic disorders, and the healthcare professionals who care for individuals with these conditions.

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Rare Disease Day - February 28 or 29

Rare Disease Day is observed each year on February 29, the rarest day of the year, and on February 28 in non-leap years. The day raises global awareness for people living with rare diseases, including Very Long-Chain Acyl-CoA Dehydrogenase (VLCAD) deficiency and other fatty acid oxidation disorders (FAODs).

In the United States, Rare Disease Day is coordinated by National Organization for Rare Disorders (NORD). One of the most popular awareness activities is the “Show Your Stripes” campaign, where supporters wear zebra stripes, the symbol of rare diseases. The zebra represents patients with rare conditions who are often harder to diagnose. Learn more or participate by sharing your story and spreading awareness about VLCAD.

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Fatty Acid Oxidation Disorders Awareness Month - July

July is Fatty Acid Oxidation Disorders (FAOD) Awareness Month, dedicated to raising awareness about metabolic conditions such as Very Long-Chain Acyl-CoA Dehydrogenase (VLCAD) deficiency. During this month, advocacy organizations, families, and healthcare professionals work together to educate communities about FAOD symptoms, diagnosis, and management. Awareness efforts also highlight the importance of newborn screening, early detection, patient support, and continued research to improve treatments and outcomes for individuals living with fatty acid oxidation disorders.

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VLCAD Deficiency Awareness Day - July 17

Join Maddie's Spark Foundation on July 17, 2026, for the first annual VLCAD Deficiency Awareness Day. Our Be the Spark campaign is dedicated to increasing awareness of VLCAD deficiency, building understanding and support for affected families, and accelerating innovative research that can improve disease management, treatment options, and quality of life for those living with this rare disease.

As we celebrate the inaugural VLCAD Deficiency Awareness Day, we invite individuals, families, healthcare professionals, researchers, advocacy organizations, community partners, and supporters around the world to join us in raising awareness, sharing stories, supporting research, and helping create a brighter future for everyone affected by VLCAD deficiency.

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Mitochondrial Disease Awareness Week- September 14-20, 2026

World Mitochondrial Disease Week is recognized September 14–20, 2026. This year’s theme, Putting Mito on the Map, is about making mitochondrial diseases more visible and showing the people, families, organizations, and researchers working to create change.

VLCAD deficiency may not be the first condition people think of when they hear “mitochondrial disease,” but the connection is important. VLCAD is a long-chain fatty acid oxidation disorder that affects how the body turns certain fats into energy inside the mitochondria. During illness, fasting, or increased activity, this can cause serious complications, including low blood sugar, muscle breakdown, and heart problems.

This week, we’re helping put VLCAD on the map and making sure the voices of those living with it are seen and heard.