Raising Hope for Families living with LCHAD
LCHAD is rare — funding and research shouldn’t be.
Long-Chain 3-Hydroxyacyl-CoA Dehydrogenase Deficiency (LCHAD) is a severe, metabolic genetic disorder that prevents the body from properly breaking down fat for energy. There are approximately 2,000 confirmed cases of LCHAD in the United States. Despite its lifelong and wide-ranging impact, LCHAD receives little to no public research funding.
RISE for LCHAD was founded by parents navigating this diagnosis firsthand. We believe knowledge is power, and our mission is simple: to fund medical research and provide financial support to families affected by LCHAD. Because the condition is so rare, nearly all research and medical advancement in this space depends on private funding.
As LCHAD is now included in newborn screening programs, the need for research is more urgent than ever. Progress depends on your support.
What is LCHAD?
LCHAD is a rare genetic metabolic disorder that prevents the body from properly breaking down long-chain fats for energy. This can lead to serious and potentially life-threatening complications, requiring constant medical management and vigilance. Despite its severity, LCHAD research is significantly underfunded due to the rarity of the condition.
About RISE
RISE for LCHAD was created by parents who understand firsthand how overwhelming and all-encompassing an LCHAD diagnosis can be. When a condition is rare, families are often left navigating complex medical care with limited resources and little research to guide long-term outcomes. RISE exists to help close that gap—by funding meaningful research and providing support to families who need it most.
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We fund innovative research focused on improving quality of life, advancing treatments, and working toward a cure for LCHAD.
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We provide support to families facing the financial and practical challenges of managing a rare, lifelong metabolic disorder.
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We raise awareness of LCHAD to drive earlier diagnosis, increased funding, and stronger advocacy for affected families.