Gillian Hall Sapia 5/7/25 Gillian Hall Sapia 5/7/25

The Risk of Speaking Up: What Advocacy Really Looks Like

I am not interested in being liked by one side or the other. I’m interested in saving lives. And sometimes that means saying the uncomfortable thing, at the uncomfortable time, in the most public way possible.

Gillian Hall Sapia 5/3/25 Gillian Hall Sapia 5/3/25

Congress Just Asked: Will America Still Lead in Cures? Here’s What They Need to Hear.

Gillian Hall Sapia 4/22/25 Gillian Hall Sapia 4/22/25

“I Shouldn’t Be Telling You This”: The Secret Dismantling of Rare Disease Advocacy at the FDA

Gillian Hall Sapia 4/16/25 Gillian Hall Sapia 4/16/25

If You Don’t Speak Up, It Didn’t Happen: Why 4 Republicans Hold Medicaid’s Fate

Gillian Hall Sapia 4/15/25 Gillian Hall Sapia 4/15/25

Be Louder Than the Chaos: Why Now Is Not the Time to Pause

Gillian Hall Sapia 4/14/25 Gillian Hall Sapia 4/14/25

I Wrote the System Failure Report. Why Do I Still Have to Prove My Daughter’s Pain?

Gillian Hall Sapia 4/10/25 Gillian Hall Sapia 4/10/25

Through the Noise: Rare Disease Still Deserves Equity

Gillian Hall Sapia 4/9/25 Gillian Hall Sapia 4/9/25

This Isn’t Baby Formula—It’s Lifesaving Medicine: How Tariffs and Supply Chain Failures Endanger Kids with Galactosemia

Gillian Hall Sapia 4/6/25 Gillian Hall Sapia 4/6/25

Not Just Numbers: The Human Cost of Delayed Rare Disease Therapies

Gillian Hall Sapia 4/5/25 Gillian Hall Sapia 4/5/25

Federal Funding Fights: How Lawsuits Are Shaping NIH, FDA, and CMS Futures

Gillian Hall Sapia 4/4/25 Gillian Hall Sapia 4/4/25

System Failure: $7.8 Million per Galactosmeia Patient in Preventable Burden

Gillian Hall Sapia 4/1/25 Gillian Hall Sapia 4/1/25

The $2.5 Trillion Math Problem That Rare Disease Families Can’t Afford to Ignore

Gillian Hall Sapia 3/22/25 Gillian Hall Sapia 3/22/25

How to Contact Congress staffers:

Gillian Hall Sapia 3/21/25 Gillian Hall Sapia 3/21/25

Fun Advocacy Ask: Name a Baby Zebra After a Rare Disease Warrior!

Gillian Hall Sapia 3/21/25 Gillian Hall Sapia 3/21/25

New Year, Same Fight: Why 2025 Demands More Than Hope

Gillian Hall Sapia 3/11/19 Gillian Hall Sapia 3/11/19

Ultra Rare

It all begins with an idea.