We may be on the horizon of a revolution in understanding rare diseases and developing new treatments, but for those living with rare diseases, raising awareness now about these little known conditions is key.

A deadly endocrine tumor discovered during a woman’s pregnancy explains years of debilitating symptoms. A complex, six-hour surgery by a Michigan Medicine team kept mom and baby safe.

After being diagnosed with a rare endocrine disease, Andra Stratton was dismayed to find little information about the condition. So she started a foundation for others also affected and seeking answers.

What do you do when you’re diagnosed with an ultra-rare disease? For one patient, the answer was simple: Find the experts and never give up.