Our Voice Is Rare, Not Invisible
"True bravery rarely announces itself with a roar; more often, it is a quiet, invisible daily choice."
Bringing visibility, resources, and community to those living with chronic conditions and rare diseases.
Out of over 10,000 rare diseases, less than 5% have an FDA-approved treatment. The journey to a diagnosis can take years, and living with an incurable chronic illness often means fighting a battle that others cannot see.
Have you ever heard…?
You're not imagining it, and you're not alone.
How we can help
Every voice matters, and all diseases deserve support, whether your diagnosis is labeled rare or common.
Welcome, I'm Leeann
I recently finished graduate school to become a Family Nurse Practitioner, and I know firsthand what it's like to navigate chronic and rare illness. I started Rare Not Invisible so that no one has to walk this road alone: a place to feel heard, find trusted information, and learn to advocate for yourself.
My story is still being written, and so is yours.
You matter. Your story matters. Your voice matters. Help me advocate and educate, because our voice is rare, NOT invisible.
You choose how your story is used and whether your name is included.
No one should walk this journey alone.
Neighbors, educators, healthcare workers, local leaders: awareness is a start. Advocacy is the goal.
Follow along
@rarenotinvisible on Instagram