Why PCARES
“Symptoms of dysautonomias reflect real biological or chemical changes. If a clinician cannot identify the cause of a patient’s symptoms, this ignorance should not lead to dismissing the patient as having a psychiatric rather than a ‘real’ problem”
-David S. Goldstein, MD PhD
Principles of Autonomic Medicine
Why our work matters?
Millions of Americans—especially children—are living with autonomic disorders like Dysautonomia and Orthostatic Intolerance (OI), yet few receive proper care. Even before COVID-19, 3–6 million U.S. patients were affected, and that number has likely doubled since the pandemic. However, only 61 specialists in the entire country are certified to treat these complex conditions.
Most pediatric cases fall to cardiologists or primary care providers, who often lack the training or tools to manage these disorders long-term. This gap leaves patients misdiagnosed, dismissed, or lost in the system—many seeing up to 70 doctors before getting real answers.
Without effective support, over 25% of patients may become fully disabled. Meanwhile, U.S. families bear high out-of-pocket costs for fragmented care in a system that spends more than any other country yet delivers worse outcomes.
To make matters worse, treatment plans often rely on outdated or general strategies—like fluids, salt, and exercise—that help only a small portion of patients. There’s little pediatric-focused research to guide real progress.
85%
Misdiagnosed
An estimated 85% of individuals with POTS and other forms of dysautonomia are misdiagnosed, most commonly with anxiety, depression, or other psychiatric disorders. While mental health struggles can understandably arise from living with a chronic, poorly understood condition, this pattern of misdiagnosis often leads to patients being dismissed, invalidated, or even denied appropriate medical care.
7-10 Years
To receive a diagnosis
One of the most significant challenges faced by individuals with dysautonomia is the prolonged time to diagnosis. On average, patients wait seven to ten before receiving an accurate diagnosis, often seeing dozens of specialists and being misdiagnosed with conditions such as anxiety or psychosomatic disorders.
67%
of U.S. Doctors have never heard of POTS
A major barrier to proper diagnosis and care is the widespread lack of awareness among medical professionals. Approximately 67% of POTS patients in the U.S. report that at least one doctor they saw had never even heard of POTS.
Our Mission
We aim to advance the care of pediatric and young adult patients by supporting research in autonomic medicine that enhances the knowledge and tools available to primary care physicians who provide clinical care.
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