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Rare diseases impact 400 million people worldwide and we know there is power in numbers – one story can make a difference.

#RAREis One aims to elevate the faces, voices and diverse perspective of those impacted by a rare disease from around the world.

Hear from storytellers who are navigating life with a rare disease, supporting a loved one and advocating for a change in the rare disease community – and the challenges they’ve encountered and overcome. Share your #RAREis One journey in your own words by submitting your story here.

Global Rare Disease Facts

There are more than 10,000 different rare diseases impacting 400 million people globally.
It takes an average of 5 years to receive a rare disease diagnosis with many instances of misdiagnosis and longer disease journeys for underrepresented and marginalized patient groups.
1 in 2 rare diseases don’t have a foundation or research support group.

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