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Rare and Relentless
Home
About
Ultra Blog
Galactosemia Reimagined
Contact
Donations to Keep this going!
Home
About
Ultra Blog
Galactosemia Reimagined
Contact
Donations to Keep this going!
If You Don’t Speak Up, It Didn’t Happen: Why 4 Republicans Hold Medicaid’s Fate
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

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

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

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Through the Noise: Rare Disease Still Deserves Equity
Gillian Hall Sapia 4/10/25 Gillian Hall Sapia 4/10/25

Through the Noise: Rare Disease Still Deserves Equity

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

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Not Just Numbers: The Human Cost of Delayed Rare Disease Therapies
Gillian Hall Sapia 4/6/25 Gillian Hall Sapia 4/6/25

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

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Federal Funding Fights: How Lawsuits Are Shaping NIH, FDA, and CMS Futures
Gillian Hall Sapia 4/5/25 Gillian Hall Sapia 4/5/25

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

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System Failure: $7.8 Million per Galactosmeia Patient in Preventable Burden
Gillian Hall Sapia 4/4/25 Gillian Hall Sapia 4/4/25

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

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

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How to Contact Congress staffers:
Gillian Hall Sapia 3/22/25 Gillian Hall Sapia 3/22/25

How to Contact Congress staffers:

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Fun Advocacy Ask: Name a Baby Zebra After a Rare Disease Warrior!
Gillian Hall Sapia 3/21/25 Gillian Hall Sapia 3/21/25

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

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New Year, Same Fight: Why 2025 Demands More Than Hope
Gillian Hall Sapia 3/21/25 Gillian Hall Sapia 3/21/25

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

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Ultra Rare
Gillian Hall Sapia 3/11/19 Gillian Hall Sapia 3/11/19

Ultra Rare

It all begins with an idea.

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