There are over 7,000 rare diseases.  A disease is classified as rare if there are less than 200,000 people living with it.  It’s estimated that between 25 and 30 million Americans have a rare disease, and over 200 million people worldwide.

rare disease map

In the past, those facing a rare medical condition felt alone. Geographically dispersed, there was no one like you, little or no support and few, if any, treatments.

Inspire’s Rare Disease Communities have over 350,000 members with 203% growth over 3 years.  With over 40 Million words and 436,000 posts, people affected by rare conditions have found each other and have a voice.

Rare Disease Communities on Inspire






million words

Where did you first meet someone else affected by your rare conditions?

Outside of Inspire (252)

Through Inspire (124)

I never have (166)

Don't Recall (12)

What benefit does Inspire provide to you? Check as many as apply.

Emotional support (289)

Friendship (175)

A place to share my feelings and be understood (292)

Empowering to take control of my health (141)

Knowledge about what to expect from conditions (300)

Advice about treatments (263)

Recommendations about specific medical professionals (159)

Advice on how to discuss my health with medical professionals (151)


~Woman with Neurofibromatosis 1

“Most of us will never meet in person, but here is a place where we all understand the diagnosis, the concerns, and what it’s like to live with this.”

Inspire’s rare disease-focused nonprofit partners

Rare disease nonprofits interested in partnering
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Research to better understand those affected by rare disease
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