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About Us
Welcome to The Charlie Elenore Foundation! Our mission is to help rare disease patients connect with resources, clinical trials, and support for travel and treatment. We believe that every patient deserves access to life-saving treatments and support, regardless of their background or financial status. Our team is composed of dedicated individuals who are passionate about making a difference in the lives of rare disease patients. We work tirelessly to connect patients and families with the resources they need to make the right treatment choice for them.
About Charlie
Charlie Elenore Quapp was born in 2014 and was diagnosed with a rare genetic disease, Glutaric Aciduria Type II, shortly after her birth. We were told we would be lucky to have a year and were sent home on hospice care. Our family endured a lot of financial struggle trying to pay for her medications that weren't covered by insurance. The endless medical appointments and hospital stays sparked battles with the insurance company. We quickly became experts at navigating insurance coverage, accessing community resources, and establishing connections within the Fatty Oxidation Disorder community.
Charlie beat the odds, and our family spent over three wonderful years with her before her passing in 2017. She was a light in this world, and I hope her name can be a light for those going through difficult times.
Together, we can make a difference in the lives of rare disease patients. By providing resources and support, patients can have the opportunity to participate in clinical trials and treatment.
Our Mission
Our mission is to help rare disease patients connect with the resources they need. We believe that every patient deserves access to life-saving treatments and support, regardless of their background or financial status.
Our Vision
Our vision is a world where rare disease patients have the opportunity to access the treatment they choose and have the financial support they need to travel or pay out-of-pocket costs.