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The Rare Reality
Why Rare Pediatric Diseases Need a Different Kind of Support
Every day, families wake up to symptoms, questions, and uncertainty most people never see. Rare childhood disease is often misunderstood, overlooked, and difficult to navigate. Families deserve answers, connection, and support long before the system knows how to guide them.
This is the rare reality.
RARE BY THE NUMBERS
300M+
People worldwide live with a rare disease
50%
Are children
95%
Have no FDA approved treatment
Years lost to diagnosis
Many families wait years to receive a diagnosis, losing time that matters.
These challenges affect families everywhere, yet they often remain unseen.
Rare is Not Rare
Rare diseases affect 1 in 10 people.
Rare families are everywhere, but they are often overlooked.
These conditions do not receive the attention and support that they urgently need.
95%
of rare pediatric diseases have no treatment
Families are left hoping for progess while managing symptoms no child should ever face.
The Emotional Burden
Rare disease reshapes childhood and family life.
Parents become advocates, caregivers, nurses and researchers all at once.
Siblings navigate a world filled with uncertainty.
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