ROBIN
LIVING WITH gMG

Living With Rare Diseases

Rare diseases can be devastating to live with, and can be difficult for even the few physicians who are familiar with them to diagnose, so even getting an accurate diagnosis becomes a process of missed opportunities and delays.

Learning you have a rare disease can be one of the most difficult diagnoses to receive. When you do get the right diagnosis, few, if any, therapies are available, and often research or regulatory pathways are unclear.

Every day, people living with rare diseases, their caregivers, and families face fears of the unknown with courage, tenacity, and grace that inspire us to continue to strive to do everything we can to transform their lives.

Rare Diseases: A Massive Challenge That's Hard to See

Tanner, diagnosed with HPP at 4 days old, with a stuffed animal

TANNER
LIVING WITH HPP

7000+

KNOWN RARE DISEASES IN THE WORLD

HAVE APPROVED TREATMENT OPTIONS

50%

OF PEOPLE LIVING WITH RARE DISEASES ARE CHILDREN

Julia, diagnosed with aHUS at 15 years old, riding bikes with her sister

Every Day We Are Changing Lives

Julia was an active, seemingly healthy eighth-grader when her kidneys unexpectedly started shutting down. Doctors didn’t know why. But when she was diagnosed with aHUS and learned about treatment options, she went from thinking about her next hospital visit to thinking about college.

Patient Experience Team

Our global Patient Experience team is responsible for ensuring that patient perspectives and engagement with the rare disease community are always at the forefront of our work. We seek to understand and incorporate insights from people living with rare diseases and their caregivers into our development plans, medicines, and services. Our promise is to partner with the rare disease communities we support to better understand the journeys patients experience in their search for diagnosis, treatment, disease education, and management of their conditions. We do this through working closely with advocacy organizations and through direct patient engagements to realize shared ambitions while respecting health information privacy.

Reach members of our team

PATIENT ADVOCACY EMAIL

Every Day Strengthens Our Impact

Our approach to serving patients with rare diseases focuses on disease awareness, diagnostic initiatives, and patient support. Every patient matters, and we hold ourselves accountable to serving each patient, and their family, every step of the way.