03/01/2025
Today is Rare Disease Day— and it matters to the Cerebral Palsy community more than you might think.
Cerebral palsy (CP) is the most common lifelong physical disability, yet many of its root causes—including genetic syndromes, metabolic disorders, certain infections, and perinatal stroke—are classified as “rare.” This leaves many individuals with CP caught between two systems: research and healthcare designed for either common disabilities or rare diseases—but rarely both.
At the Cerebral Palsy Foundation, we believe “rare” should never mean invisible. Yet:
⚠️ Too many families wait too long for an accurate diagnosis and treatment options.
⚠️ Too many children lack access to critical early interventions that could change their futures.
⚠️ Too many adults face a lifetime of medical uncertainty.
It doesn’t have to be this way. We need urgent investment in early detection, intervention, and lifelong care—because everyone deserves access to the best possible future.
