Rare and Relentless is a space born out of both heartbreak and hope. It is written for every family living on the edge of medical neglect, every caregiver fighting to be heard, and every policymaker who still doesn’t understand the cost of doing nothing.
This blog tells the truth about rare disease—without apology. It blends the raw honesty of lived experience with the professional clarity of a nurse, advocate, and mother who refuses to give up.
Here, stories aren’t just personal—they’re political. Each post is grounded in research, policy, and economics, because rare disease families deserve more than sympathy: they deserve solutions.
About Me
My name is Gillian Sapia, RN. I am a legislative advocate, nurse, and the mother of a child with classic galactosemia, a ultra-rare genetic disorder, she also has chiari malformation and is medically complex.
I’ve stood at hospital bedsides, in statehouses, and on Capitol Hill. I’ve written reports on the burnden patients carry. I’ve challenged the FDA’s failures to approve safe treatments, pressed NIH for fair funding, and demanded Medicaid and CMS stop denying life-sustaining formula and therapies.
But before all that, I was just a mother, handed a diagnosis that few doctors understood. I know what it’s like to fight an invisible enemy while also fighting broken systems.
That is why I write—because silence costs lives. Because data without human voices gets ignored. And because my daughter, and every child like her, deserves better.
Why This Blog Exists
To expose the hidden epidemic of rare disease.
To connect family stories to systemic failures.
To translate policy jargon into human terms.
To fight for reforms at the FDA, NIH, CMS, and SSA.
To remind the world that rare isn’t rare—it’s 1 in 10 Americans.
This is not a space for pity. It is a space for action. For courage. For change.
Join the Fight
Every story matters. Every voice adds pressure. If you are a patient, caregiver, or ally—your fight is our fight.
Follow, share, and use your story as power. Together, we are Rare. Together, we are Relentless.
Media interviews:
Check out The Galactosemia Podcast by Ryan and Jill: When Every Day is Advocacy with Gillian Sapia
Interview by Rachel Scott: Medicaid: Millions may soon lose Medicaid
An RN’s Journey Managing Her Daughter’s Rare Disease-Ailthea Athans
Teaching Kids about Rare Disease- Oncodaily
