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.

1 in 10

People affected

30M+

US population

10,000+

known rare diseases

95%

have no approved treatment

RAREis Stories

Rare Impact
Supporting the People Behind Rare Disease Advocacy

Behind every advocacy organization are people carrying the weight of their communities. As that weight grows, so does the need for support.

Rare Impact
Meet the 2025 Global Advocate Grant Recipients

Celebrate the 25 organizations leading rare disease advocacy through community, connection, and lived experience.

Rare Voices
Meeting Myself in The Middle: My MG Story

Read Laura’s #RAREis One story of finding balance in the middle—between symptoms and solutions, challenges and advocacy and where we are and where we want to be.

Explore 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.

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.