About Rare + Relentless
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
Absolutely. Here’s a clear, grounded version that says this without sounding defensive or divisive — it honors organizations and protects your independence and voice.
Being independent allows me to say things others sometimes can’t.
Large foundations and advocacy organizations play a critical role. They build infrastructure, maintain relationships, work within formal processes, and carry responsibility to many stakeholders. That work matters deeply, and I respect it.
But those same structures also come with constraints — language, timing, diplomacy, and obligations that don’t always leave room for full honesty.
As an independent advocate and parent, my role is different.
I can speak from lived experience without filters.
I can name patterns as they appear.
I can say, “this is what it looks like on the ground,” even when the truth is uncomfortable or unfinished.
Patient stories aren’t a replacement for formal advocacy — they are the evidence that gives it weight. They are the examples policymakers, regulators, and researchers need when abstract arguments aren’t enough.
This space exists for that purpose.
It’s for the rawness of rare and ultra-rare disease.
For the questions that don’t fit neatly into press releases.
For the realities families live between clinic visits and policy wins.
Both roles matter.
Structure and honesty.
Strategy and truth.
This is where I hold the truth — so others can point to it and say, “Here. This is what we mean.”
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 with a patient not a paper.
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
