In Honor of Augyst

Long before becoming a caregiver, Ashley was already navigating life with rare diseases herself. She understood the appointments, specialists, insurance battles, medical uncertainty, and emotional weight that often come with living with complex health conditions.

But when Augyst entered the world and their journeys became intertwined, Ashley discovered an entirely different reality.

Navigating her own health was one challenge.

Navigating a child's rare disease while trying to be their advocate, coordinator, researcher, caregiver, and parent was another world entirely.

Suddenly there were specialists to manage, medications to track, records to organize, therapies to coordinate, insurance battles to fight, and endless decisions to make. During some of the hardest moments, families are handed scattered resources, disconnected systems, and impossible responsibilities while simply trying to care for the people they love.

Ashley lived both sides of that experience.

As a rare disease patient.

And as a rare disease caregiver.

Through that journey she realized something universal:

Whether you are managing your own chronic illness, caring for a child with a rare disease, supporting a spouse through cancer, helping an aging parent navigate dementia, or coordinating care for multiple loved ones, the emotional weight can feel overwhelming and isolating.

Caregivers and patients are often expected to hold everything together while carrying more than most people can see.

Research consistently shows that caregivers frequently experience isolation, stress, burnout, and a lack of coordinated support while navigating complex medical systems.

Forgotten Rare was built to help carry some of that weight.

What began as one family's rare disease journey has grown into a caregiving platform designed to provide organization, clarity, emotional support, practical tools, and community for anyone navigating complex care.