Rare Disease

A rare disease shouldn't mean years without answers.

We wait years for a diagnosis and the right care.

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The burden

30 million

people in the U.S. have a rare disease, nearly 10% of the population1

3–15 years

is a common timeline for a rare disease diagnosis1

95%

of rare diseases lack an FDA-approved treatment1

Sources

  1. National Center for Advancing Translational Sciences (NIH). Rare Diseases Fact Sheet. 2023.

Figures as stated by each source; checked November 2026.

Key dates in Rare Disease

Moments to act together.

All key dates →

Next six months. Dates from official sites; checked November 2026. Programs run in the United States. Global congresses and world days are listed for reference.

Work with us in Rare Disease

Patients can't wait. Neither can we.

Advocacy & communities

Reach more patients at the right time.

Partner with us

Life sciences

Close the gap between eligible patients and guideline-based care.

Close the gaps

What's new in Rare Disease

How care is changing.

    All news and events →

    Updated weekly from federal agencies, guideline bodies and national nonprofits. U.S. sources for now, while programs run in the United States. Approvals are listed by date from FDA notices. Rabble Health may work with companies whose products appear here; no company reviews or influences what is listed.

    Talk to us

    Bring us a care gap.

    Tell us where patients are falling out of care.

    Request a discovery call