Rare is everywhere.

 

Rare diseases may be individually uncommon, but together they affect millions of people around the world. RAREis™ amplifies the voices and experiences of people living with rare diseases—patients, caregivers, advocates, and leaders whose stories deepen understanding and strengthen connection across the rare disease community.

Explore Stories
1 in 10

People affected

30M+

US population

10,000+

known rare diseases

95%

have no approved treatment

RAREis™ Stories

2026 Advocacy Summit
Rare at Amgen
A Room for Rare

Within Amgen's largest-ever Advocacy Summit, more than 50 rare disease advocates found a room of their own to exchange ideas, learn from one another, and imagine what more could be possible together.

Learn More
Lexi Marta
Rare Impact
Choosing What Comes Next

A rare disease diagnosis changed the college experience Lexi Marta imagined. What followed was a journey toward community, research and a future she chose for herself.

Learn More
Finding Her Way Back
Rare Voices
Finding Her Way Back

After retirement, Anna expected to spend her days traveling to softball games and riding horses through the mountains. When Graves’ disease and thyroid eye disease changed the picture, Anna found herself navigating a new path.

Learn More

Explore Resources

Rare Resources
Genetic testing
Genetic Testing
Education
Education and Employment
RAREis™ 2024 
White Paper

Rare is complex, and finding the right support isn’t always simple. Explore resources that make navigating care, life, and next steps more manageable. Because no one should have to figure it out alone.

A closeup of Lexi Marta, 2021 RAREis Scholar A closeup of Lexi Marta, 2021 RAREis Scholar
Quotes-blue Quotes-blue

RAREis™ allowed me to continue that path towards normalcy, towards choosing the things that I want to do and having that agency."

 

Lexi Marta

2021 RAREis™ Scholar

Advancing Rare 
Advocacy Together

 

Across Amgen, teams work alongside patients, advocates, and organizations to advance awareness, understanding, and progress for people living with rare diseases. Learn more about how we’re amplifying the voices, partnerships, and advocacy that help strengthen the rare disease community.

Rare at Amgen
Amgen staff attend the inaugural SPAARK convening in Washington DC Amgen staff attend the inaugural SPAARK convening in Washington DC
Section Section